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Could this be Ulcerative Colitis?

900 replies

Chocol8 · 25/10/2011 22:12

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

OP posts:
plusonemore · 13/05/2012 20:22

hi, thanks all over with now. It was the most horrible painful thing ever- worse than childbirth, like a really long, scrapey smear. I really dont think the sedative worked, I havent felt any different at all!. The colitis is just in the rectal area (I think he said) which is good, so being referred on to gastrointestinal people and have a squirty foam thing to use in the evenings. Hats off to anyone who has done it more than once! Think I have been so lucky to have it mild when I read what some of you are going through, big Wine to you all!

Chocol8 · 13/05/2012 22:19

Glad it's all over for you now Plus and you know where the disease is. I hope you enjoy your first meal after the emptiness - i know i did.
I found it really painful too, but then i didn't have a sedative....as others have said, it was especially around the corners.

Pigglesworth, thanks for your post - and thanks for the offer of writing more about the SCD diet. I think for me to start eating meat after nearly 30yrs would cause some major problems - even if i wanted to, which i don't.

I must also admit to being totally uninspired with what i've seen of the diet (i looked at your original link when you posted it), i think cos i don't like a lot of the food and how limited i would be because of it.

It's become obvious i am going to have to go back on the low residue diet until i can see the dietitian the week after next. I am suffering again due to eating properly, so i agree that UC can be affected by diet.

OP posts:
Pigglesworth · 14/05/2012 00:49

Yes it's a restrictive diet although I can follow it only extremely loosely without problems - i.e., I have lactose-free dairy, chocolate, lollies, corn chips, rice and gluten-free stuff in moderation, potatoes and sweet potatoes in moderation, hard cheeses and soft cheeses in moderation, any sauce/ dressing I want, etc. - I just essentially stay away from wheat products and normal dairy products and sugary drinks, but even have some of those occasionally (but usually suffer the consequences and get a flare if I have too much wheat/ dairy), and that is enough to keep my disease mainly in remission and controllable. It is only when I can tell a flare is starting that I'll become very strict and so far that has always stopped the flare from developing.

I guess it's just hard for me to read about all of you with such awful, painful, life-limiting symptoms that have been going on for months/ years, and knowing that the medication we're given is not perfect for treating this disease anyway and some medications can have serious side effects, and also knowing that continued inflammation leads to an increased risk of bowel cancer as well as other long-term health problems, yet also knowing of a potential solution that few seem interested in! Oh well. I guess at least the possibility of trying the SCD is out there if the stakes for anyone are ever high enough - e.g., they're being faced with bowel surgery/ having a permanent ileostomy or colostomy and are desperate to do anything to avoid it! If anyone ever gets desperate I would strongly recommend you at least try the SCD.

For anyone who missed my earlier post...
337 reviews of the SCD on Amazon.com:
www.amazon.com/Breaking-Vicious-Cycle-Intestinal-Through/product-reviews/0969276818/ref=cm_cr_pr_top_helpful?ie=UTF8&showViewpoints=0

50 reviews of the SCD on Amazon.co.uk:
www.amazon.co.uk/product-reviews/0969276818/ref=dp_top_cm_cr_acr_txt?ie=UTF8&showViewpoints=1

I do write this purely out of a passionate desire to help others suffering with UC/ IBD the way I have been helped - not to push an agenda - and will be bowing out of this thread now! :) I'm sorry you're now suffering Chocol8, this disease is difficult because when you are feeling good/ better, it's easy to believe there's nothing wrong with you and so you may start skipping/ lowering medication or eating foods you know are more risky, which eventually triggers the UC again. But usually you can get away with pushing the boundaries for a while before you inevitably become sick. I struggled with accepting that I actually have UC regardless of whether or not I'm in a flare, and need to take my medication consistently and as directed by my doctor, right up until only the past year or so. That is a very long time before acceptance considering when I was diagnosed (though I had years of remission in my early teens). What helped me was to tell myself that the NATURE of UC/ Crohn's/ IBD is that it's a disease where the symptoms fluctuate - it is the nature of the disease that there will be periods where you feel good and have no symptoms. That doesn't mean you're better though - you still have the disease and will always have the disease and so always need to take your medication properly etc. no matter how well you're feeling. I was inspired by a work colleague who has Crohn's and insists on a twice-yearly colonoscopy - though her gastroenterologist would have her do this less frequently - because she has a strong family history of early-onset bowel cancer which many relatives have died from. She takes such responsibility for, and is so proactive about, her health which I found really inspiring.

Good luck everyone!

Pigglesworth · 14/05/2012 00:49

Sorry, working links:

For anyone who missed my earlier post...
337 reviews of the SCD on Amazon.com:
www.amazon.com/Breaking-Vicious-Cycle-Intestinal-Through/product-reviews/0969276818/ref=cm_cr_pr_top_helpful?ie=UTF8&showViewpoints=0

50 reviews of the SCD on Amazon.co.uk:
www.amazon.co.uk/product-reviews/0969276818/ref=dp_top_cm_cr_acr_txt?ie=UTF8&showViewpoints=1

funnyperson · 14/05/2012 02:03

worked too hard. ate too much bread. have now got flare up. am mis. have got to go to work as loads to do. really really mis.Sad

agree though that wheat and sugar free diets work better.

funnyperson · 14/05/2012 02:05

really mis. darent tell family, as they will only get worried and bother me more. need lots of cheering up.

Chocol8 · 14/05/2012 17:32

ThanksThanksThanksThanksThanksThanksThanksThanksThanksThanksThanksThanksThanksThanksThanksThanksThanksThanks
Those are for you Funny - poor you suffering again. I know it's no consolation, but we know how you feel. Healing hugs to you.

Thanks Piggles - i totally understand promoting something that works for you when you can see others in pain and you have been there yourself.
If i have cereal (was told Cornflakes were ok) i have soya milk (decaf latte with soya milk is fab!!) and only have cows milk in tea.
The no potato, no carbs was what was worrying me - as i practically live off them on the low residue diet.
I am regularly bombarded with information about what i can and cannot eat and can only try to see if it works for me.
I will relook at the diet and see how i can adapt it cos i am buggered if i am taking medication which are doing me and my body no good and making my hair drop out in handfuls.

Just incase anyone needs them, these are for everyone else: ThanksThanksThanksThanksThanks.

OP posts:
AvaMaria · 14/05/2012 19:51

Hello all, I am still really suffering. The pain is soooo bad now I cannot speak properly or function when it is at its peak. I am also going to the loo about6 x in the night and 15 in the day and can hardly eat, though I am ravenous! I spoke to the nurse and she spoke to the doc, said maybe I'd have to go back on steroids, am on asacol tablets and foam enemas at moment. Or the doc may want to admit me.

So upshot is I have an appointment to see doc on weds morning, she told me to bring a bag asi might be admitted. But dp is away till weds evening with work so I have to bring DCs to the appointment with me! So I told nurse I can't be admitted till later on weds! In a way I hope I am admitted, I cannot go on like this. I spent ages this afternoon lying on the sofa eith in agony or drifting in and out of sleep while dd was in the jumperoo and ds played megablocks. Luckily they are angels most of the time, only ds's constant chat kept me awake. I am hot and cold and sometimes doubled over with pain and can hardly eat!

Fingers crossed for me ladies please.

What can expect in hospital? Any tips? Chocol I know you were there recently.

funny my sympathies to you. I hope you start to feel ok and this does not take off to be a bad flare. I just find that only my mum, who has uc herself, really understands what it is like

AvaMaria · 14/05/2012 19:52

plus take care of yourself now, it's great you have an answer. The Kleanprep stuff and the colonoscopy are pure he'll. I had mine a couple of weeks ago.

plusonemore · 14/05/2012 20:32

hey all, your posts are all so reassuring and worrying all at the same time! Feeling for those of you having a bad time at the moment, ava hope you get admitted just so you can have a proper rest!
Seems the sedative decided to wait until today to work for me, which was useful! Felt woozy all day! Luckily my mum was here to make sure I could have a rest (despite DS1s tantrum this morning)

Wondering how much of a change to my diet I'm going to have to make? Had fish and chips tonight, twas my treat for the not eating time, the thought of it kept me going.

Anyway, feeling shattered so off to bed soon, Yet again I wish all of you well; still feeling lucky when I read your troubles Brew

Chocol8 · 14/05/2012 22:55

OMG, poor Ava! I so hope you are admitted, as you say, you cannot continue like this! When i went in - about 7 weeks ago, they gave me iv steroids and made me have bed rest (it was very noisy night and day so not much rest though). Quite literally from the first 400mls of steroids i felt better. I stopped bleeding and stopped rushing off to the loo - which made me look like a liar for saying i was going 40 times a day!

I was put on all sorts of medication and came out with a carrier bag full of potions and tablets which i weaned off over the following weeks.

I hated being in hospital but i know ultimately it showed that the iv steroids worked. Although i did start bleeding again once i came out.

You need to make sure you put across how bad you are and that you cannot carry on like this, that you have no quality of life whilst in this state Ava. It is easy to say you are ok, but you really are not.

I wish you lots of luck for Wednesday and when packing your bag, make sure you pack some earplugs as you will need them (even if you're in a side room).

If you don't post on Wednesday night, we'll know you have been admitted. Here's some flowers for you too. Hoping you have a settled pain-free night.

Thanks Thanks Thanks Thanks Thanks Thanks Thanks Thanks Thanks Thanks Thanks Thanks Thanks Thanks Thanks ThanksThanks Thanks Thanks Thanks Thanks Thanks Thanks Thanks

OP posts:
funnyperson · 14/05/2012 22:55

Thanks Thanks for sympathy and flowers. Cheered me up loads that someone responded.
Dreadful day at work. Another busy day tomorrow. Will 'relax' at a conference on Wed.
Have deffo got flare up. Am now on loads of freshly squeezed lemon juice with fresh mint from the garden and a bit of grated ginger. Yum. And increased pentasa.

I blame the rain.

spiderlight · 15/05/2012 16:46

Lots more ThanksThanksThanksThanksThanks for Ava and Funnyperson - so gutted that so many of you guys are still having a rotten time :(

plusonemore I'm sorry you had a painful colonoscopy but it's very good news that you know the UC is restricted to the one area. Hopefully the foam enemas will really help.

I'm having horrid period pain/nausea/constipation/pain in left side today. Hoping it will ease off when my hormones calm down a bit.

Ava, when I was in hospital I basically lay around reading and watching telly all day, apart from IV steroids and the daily blood tests. Having to use the communal loos was vile and the food they kept bringing me was unbelievably bad and totally unsuitable for colitis, but other than that it was just very very boring. Having to be admitted is crap but you can't be in all this pain.

MrsPinotGrigio · 15/05/2012 16:57

Oh funny ThanksThanksThanksThanks for you. Poor you - hope you are better very soon. I blame the weather for everything as well & the rain is awful at the moment!!!!!

plusonemore - so glad you got some answers & hopefully you won't need another colonoscopy. Hope you get an appointment to see the gastro soon. The gastro may want you to see a dietician or they may try to control with meds at first. I don't see the dietician now unless I ask to & haven't really made that many changes to my diet, although I'm on Low Residue (Fibre) I can eat just about anything except brown bread, rice etc. I'm still learning what I can have though so have had a few days of pain like I did on Saturday night/Sunday after having steak cooked medium on Friday night - really enjoyed it but won't be having it again as its not worth it!!!

Ava ThanksThanksThanksThanks for you as well. Hope everything goes well tomorrow & if you are admitted that you don't have to stay too long. I found being in hospital ok & although I missed DS & DP like mad it was so much less stressful & I did get better quite quickly. The IV steroids work so much quicker than the oral ones & the pain relief was a blessing!!!! Take some books, magazines & maybe an ipod & use the time to get as much rest as possible. I also asked as many questions as I could think of as I saw a dr nearly every day & I found out so much about the disease & the different ways of treating it. Also ask for sleeping tablets if the steroids cause insomnia - its hell trying to sleep in hospital!!! I was only in as long as I was cos they were trying to get the liquid diet right & then I needed blood & other fluids. Take care & try to let us know what happens.

Hugs ((())) to everyone else as well- hope you are all feeling ok.

Chocol8 · 15/05/2012 19:17

There's a few of us suffering at the moment - i am sorry...altho i blame the weather too (especially the massive hailstones!!!).

I've had to revert back to the low residue diet again after only a few days of 'normal' food. I'm still bleeding badly (with urgency, mucus, explosions, diahorria and pain) - not that i went mad. Cannot continue to eat it, just have to let my eyes caress the food instead of my tastebuds. Very Sad

OP posts:
l4k · 15/05/2012 22:44

Just wanted to say I hope you all feel much better soon.It sounds like you are all suffering and could do with some pampering.Take care of yourselves.

funnyperson · 16/05/2012 21:01

Am on the mend. 3 days of detox with loads of fresh lemon made up with water and ginger, alternating with yoghurt and honey did it. And increased Pentasa of course. And a very nice day at a conference.

I hope everyone else is on the mend too.

Chocol8 · 16/05/2012 21:49

Thanks I4k - pampering sounds like an excellent idea!

Funny, so glad to hear that you're on the mend now. Is that all you had for 3 days?

OP posts:
l4k · 17/05/2012 08:53

morning! how are you all doing today?
I recieved a call from the endoscopy unit yesterday asking me to go fri(tomorrow) for the flexi-sig.I know they are going to take biopsies but can they actually see much more than the normal sig? also,I will need to do the enema before which hasn't arrived yet,Whats that like? hope you don't mind me bothering you with this.I'm still getting urgency and often and pain and mucous but no blood for a few weeks.

Chocol8 · 17/05/2012 10:56

l4k, i found the flexi-sig not painful and very quick - think it lasted about 5 mins. A nurse administered the enema about half an hour beforehand. Did they say they were going to send it in the post (you may get it a week on Wednesday if it's sent first class, lol!)?

From what i read up originally about flexi-sigs, they are the more modern version of the sigmoidoscopy, so seems to be the one they favour as it goes round corners better, but i could be wrong. It only views the left hand side and obviously the rectum.

Let us know how you get on tomorrow and try not to be too stressed about it - you'll be out before you know it. The escaping air/gas can be a problem afterwards but strangely i had more pain several hours after the consultant took a quick look-see in his office...?!

OP posts:
MrsPinotGrigio · 17/05/2012 14:24

funny so glad you are on the mend - is that all you had for 3 days? You must have been starving!!! Although I suppose it gives the bowel a rest which might stop the flare in its tracks - which it has obviously done.

spider ThanksThanksThanksThanks for you as well - hope you feel better & it was just your hormones. I've noticed that in the first couple of days of my period I feel a little bit of 'discomfort' in my bowel - can't say its painful just not 'right' so I suppose that could be down to my hormones.

Chocol8 ThanksThanksThanksThanks for you as well as I notice you've put yourself back on Low Residue. Hope you get sorted soon.

l4k I've never had a flexi-sig but good luck & hope it goes ok.

I'm having my small bowel barium next Thursday & will see the consultant 2 weeks after. I'm going to cut right back after the weekend & go back to plain almost liquid food & my Modulen shakes to try to rest my bowel before the procedure.

Hope everyone feels better soon. To be honest I feel a bit of a fraud here as I really do feel quite well at the moment & I seem to have got the Crohn's under control quite quickly compared to those of you with UC. Although they are related they are very different diseases aren't they & UC seems so much more unpredictable.

More ThanksThanksThanksThanks for everyone.

l4k · 17/05/2012 14:42

Thanks chocol8 and pinot.
yes ,they are sending the enema in the post ,it didn't arrive today so had better come tomorrow!! they said I need to do it at home 1-2 hours before appt.
Is the low-residue working chocol8?

I have no idea if this helps but I have a wheat intolerance and eat similarly to that specific carb thingy.I do wonder how much worse my symptoms would be if not.I don't want to chance finding out!
Thanks again.

Chocol8 · 18/05/2012 11:47

Thought this was interesting - for those of us (most) who have had to endure a colonscopy. I wonder if/when this will be introduced....

healthland.time.com/2012/05/15/can-laxative-free-colonoscopy-improve-colon-cancer-screening-rates/?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+timeblogs%2Fwellness+%28TIME%3A+Wellness%29

OP posts:
Chocol8 · 18/05/2012 20:25

l4k, did your enemas arrive ok in the end? How did you get on?

Yes, i feel the low residue diet is a lot less painful on my system. Made some gorgeous potato and cheese puff savouries today, nom, nom.

OP posts:
l4k · 18/05/2012 21:33

they sound good chocol8.

It went ok,did the enema but still had some in there Blush not sure if thats cos I was waiting ages.He said it was fine as far as he could see but took 6 random biopsies to check for microscopic colitis. The colorectal man who refered me and my gp should get results in 3 weeks then I may or may not get another appointment with the consultant.

Don't know what to think now. Felt terrible when finished,bad headache and totally drained but better now I've had a little sleep on sofa.