Ulcerative Colitis Forum

Re: Advice please! UC Proctitis, pending biopsy results.

Thu, 11 Mar 2010 18:45:21 +0100

Author: welshgirl
Forum: Lifestyle, Diet, Nutrition and Food Supplements

yeah, I try not to take movicol all the time for the same reason - exercise and keeping hydrated defo way forward!

Re: Advice please! UC Proctitis, pending biopsy results.

Thu, 11 Mar 2010 18:38:58 +0100

Author: davidhart
Forum: Lifestyle, Diet, Nutrition and Food Supplements

I've been told that exercise, plenty of water (dehydration can cause constipation) and fibre all helps to keep things moving. You could try fibrogel, although my doc advised against it saying that your body can get used to it if you take it regularly.

Re: Advice please! UC Proctitis, pending biopsy results.

Thu, 11 Mar 2010 18:02:17 +0100

Author: welshgirl
Forum: Lifestyle, Diet, Nutrition and Food Supplements

I am also so pleased to meet people like me!

I don't know what to do about the constipation....I know how to solve it but not stop it - any advice on that would be great!!

When I am blocked, I take the movicol and I have lots of hot water with a slice of lime - I also exercise a lot as this does tend to keep things moving!

Hope this helps....

Welsh girl XXX

Re: Movicol

Thu, 11 Mar 2010 17:56:59 +0100

Author: scotfrodo
Forum: Medications

Never heard of the stuff but can anyone recomment an allternative other than movical? Cause i am trying to avoid heading to my GP cause he always asks me what i want?? aha
However i did hear there is chocolate movicol

Re: painful joints

Thu, 11 Mar 2010 17:37:59 +0100

Author: excyclist
Forum: Coping with Colitis

Well the hospital has sorted out my painful joints. pain has gone but so has my colon. No more UC or painful joints and a proud owner of a J pouch LOL

Re: Movicol

Thu, 11 Mar 2010 15:00:18 +0100

Author: lunamoon
Forum: Medications

Ive got used to Movicol, although it still isnt pleasant and i still hate taking it, atm im not cos im at the other end of the scale, running to the loo 3-5 times.

have you ever had Klean prep?

now that is nasty stuff!

When will increased Aza kick in?

Thu, 11 Mar 2010 12:55:49 +0100

Author: chickface
Forum: Medications

Hi all, I've been on azathioprine since last September - at 50, 100, 125 and most recently 150mg since the middle of January. I know it can take a while to take effect but how long will it be before I will know if it's going to do the trick? I've been on prednisolone for 10 months now and trying to get off it is starting to feel like banging my head against a brick wall! My consultant has said that 150mg is about the right dose for my weight so if this doesn't work I think I'm starting to run out of options :(

Re: Advice please! UC Proctitis, pending biopsy results.

Thu, 11 Mar 2010 12:16:01 +0100

Author: Pinkellie
Forum: Lifestyle, Diet, Nutrition and Food Supplements

I am so pleased to hear from other people who have proctitis and also suffer with constipation - I get really stressed when this happens and doesn't help.

Any tips to avoid the constipation in the first place would be much appreciated.

I am taking 6 ascol tablets per day

Thanks

Jo

Re: VSL#3

Thu, 11 Mar 2010 11:07:31 +0100

Author: suenew61
Forum: Medications

I would highly recommend VSL3.
It can't be coincidence that we normally have a massive amount of mixed bacteria in our colon, and there are several vitamins and important substances (e.g. short chain fatty acids) that we get via the colon after late digestion by our colonic bacteria. Following continued diahorrea the normal balance is lost and VSL3 may ‘force’ a more normal population back into residence.
VSL3 is different from most probiotic products because it contains 450 billion bacteria per sachet making it much stronger than others on the market, and it also has some heavy-duty scientific research studies that confirm it’s effectiveness in some circumstances. VSL3 is so concentrated that you may need to slowly increase your dose because it can cause some wind discomfort to begin with as your colon adapts to it.
Once my daughter settled onto the VSL3 we also introduced Bimmuno – which is a prebiotic product that provides specific nutrients to the colonic bacteria and so also supports a more steady population.
Sue

Re: VSL#3

Wed, 10 Mar 2010 19:04:37 +0100

Author: richardc
Forum: Medications

Hi,
I've just finished a 3 month trial of VSL#3 as a last ditch alternative to starting on aza.. It's completely cleared my UC - so much that according to the specialist, my recent biopsies didn't show any trace of colitis, and not only do I not need aza, but I don't even need a colonoscopy for another 2 years!
I've had UC for over 20 years now, and it's the only thing apart from prednisolone that's had any effect.
My colitis has been quite mild for a few years, but I'm allergic to 5-asa (pentasa), so aza would've been the next step.
I guess there are probably a variety of root causes of UC, and it probably depends which type you've got, but I think it's definitely worth giving VSL#3 a try. I'm getting it on prescription - the GP did moan a bit about the cost, but then again it's probably cheaper than aza.
Hope this helps.

Rich.

Re: Synbiotic treatment - an inexpensive cure?

Wed, 10 Mar 2010 18:29:39 +0100

Author: pinkle82
Forum: Research

Hi David,

thanks so much for being the guinea pig, had a wee giggle at your methodology! Might be useful to get a bunch of people trying something new- not sure how ethical it is to run it through a forum, but perhaps we could get a few willing flarers and a few remissioners and see if things improve.

i tried VSL before without much luck but I was flaring at the time and it seemed to make things worse!

Re: Infliximab vs Surgery

Wed, 10 Mar 2010 18:22:19 +0100

Author: pinkle82
Forum: Surgery

Hello there,

I've had UC for a few years and it grumbled along until i flared very badly and was given no option but surgery, until I found out about infliximab. i kicked up holy hell to get it and after 3 weeks in hospital I got it and it was miraculous, it heals your bits so quickly. However, and this is important, the typical approach for UC patients, which differs from Crohns a lot of the time, is that there is a very specific approach to infliximab administration, us UC people don't get it for keeps- The funding body who agrees the protocol for drugs is called the NICE (bit of a misnomer!) and they say infliximab is expensive and there are other (cheaper) drugs that will do the job for UC people just as well...

So it is likely that Hayley will get three rounds of infliximab, at 1, 8 and 12 weeks (or something like that) and while that's working, they will be looking to use other drugs to help her stay in remission (symptom free/reduced) long term. I was given azathioprine which is an immunosuppressant - it takes 3 months to build up in the system (more like 6 for me) on top of steroids in the beginning- so the infliximab/steroids kept me all together while the aza got a grip. Im on azathioprine alone for the forseeable future. Im not that enamoured with the idea of such a powerful drug, but i feel so much better than i have in a long time, it has taken almost a year to get to this point.

I dont know how long I will stay in remission- if i was to flare again I would honestly have the Op in a heartbeat, I've been told I wouldnt get any more infliximab. Athough i am pretty much symptom free, I still dont feel quite myself a lot of the time, the drugs you take long term can have many different side effects, some are hard to put a finger on. I am a happy wee soul, I work full time get up to mischief and enjoy life, but if i had the opportunity to have the op, knowing everything i know now, i would.

Personally, I would say there is no harm in trying the infliximab, for me it was the utter terror of facing surgery as an emergency patient and having no clue about what to expect, i know so much more now thanks to things like this forum. If it works It will give you guys time to consider other options, for Hayley to get a bit stronger and to prepare yourselves for whatever comes next.

If you dont try it then that's understanadble too, its a very powerful drug. Surgery is no walk in the park, but Hayley clearly has lots of support and apart from a very small percentage, I know of no one else who isnt very happy with their decision to have it and be drug/symptom free. It will be hard in the beginning, but long term it can be liberating, and i quite like the idea of a wee pet stoma...!

I know this is a very difficult decision for Hayley and for you I hope it all works out well whatever you decide, please keep us posted

Sorry for the huge post!

Best of luck!!

x

Re: How old is everyone?

Wed, 10 Mar 2010 15:25:33 +0100

Author: lozz1962
Forum: Coping with Colitis

Hi all,

New to forum. I am 48 next monday 15th March. Diagnosed in 1999. Like alot of you was mis-diagnosed by GP (Thought I had enteritis) and thanks to my mum (God rest her sole) I was finally admitted to hospital where I was de-hydrated and malnutrioned. Luckily the hospital was brilliant and got me sorted. Have had years of remission but recently had the worst flare-up .

This forum has really helped. At least I now realise I'm not alone

To all sufferers

X Lozz X

Re: Ups and downs, am I coping, not too sure.

Wed, 10 Mar 2010 14:54:36 +0100

Author: lozz1962
Forum: Other

Hi,

Think we all in same boat here, I also have been on steroids for 10 years. Managed to get down to 3mg a day but soon after had the blood, mucus etc etc. My consultant changed my anti-inflammatories as my body was not absorbing asacol. After a couple of days on Pentasa Granules My stools were normal (Hooray) BUT yesterday and today have noticed granules in my stools now . On a positive note though when I was in remission I did get a holiday to Florida and also California (Curtisy of my lovely understanding brother). I avoided fried foods and ate healthily and for once my UC did not rule my life. Once in remission you will be able to have holidays. Just make sure you have a european health insurance card (obviously just for European holidays) and that will cover any treatment you may need when abroad.

Hope this helps a little bit.

X Lozz X

Re: Changed from
Wed, 10 Mar 2010 14:21:37 +0100
Author: lozz1962
Forum: Medications

Thanx for reply.

I have found that the granules are coming out undigested as well, even tho my symptoms seem to be improving. My consultant does not seem to bothered about this but I can't understand how the meds can carry on working if they are not being absorbed. Will try drinking more water and see if that sorts it out.

Thanx again for advice

X Lozz X

Re: Infliximab vs Surgery

Wed, 10 Mar 2010 14:17:14 +0100

Author: sammy1973
Forum: Surgery

I am not quite sure if i am qualified to give an opinion as i had no choice but to have the surgery after only two months of having the awful UC.

But after suffering for just two months with 20 plus visits a day to the loo and my complete lack of energy due to the massive blood loss every day and my children having to fend for themselves because i was incapable, i am a big believer in surgery, don't get me wrong as soon as it was mentioned i think i did say God take me now there is no bloody way i want a crap bag rather loudly as i recall.

I am now 16 months post op, i eat and drink what i like, i have been swimming, camping, walking and i am planning my wedding for this October, so for me not only did it save my life it gave me a new lease on life and that was only having the illness a short time, i just wanted to be well again i admire every single one of you who has had to deal with it for longer than i did.

and Hayden if Hayley wants to give the drugs one last go before she admits defeat then go for it she might be one of the lucky ones, but at least you know there is a next step after that to feel well again, and like Reg has said there is always the reversal route to go down at a later stage once she is feeling better again.

Me personally is happy as larry with my crap bag, even though it has stopped my cage fighting career Reg but i was never much good at it anyway

Re: Anyone read Mark Kanters, 10 day colitis cure?

Wed, 10 Mar 2010 11:04:30 +0100

Author: hellothere
Forum: Lifestyle, Diet, Nutrition and Food Supplements

Yup, just gave it a read - I'm in Spain where supermarkets barely stock anything outside of meat, eggs, and veg, and they don't really have health stores, so no going to actually be able to try his method(involving a few fairly difficult to procure, specific health foody items and tablets) until I get back to England, but I'm quite skeptical that it'll work for me. Mark seems to have said that his colitis was more or less triggered by antibiotics (combined with stress and diet), whereas I wasn't taking any antibiotics and haven't really tried loads of different antibiotics, so I doubt my colitis has the same cause. You could give it a try, and it sounds like it really helped him, but he still can't eat carbohydrates, thus the end product seems pretty similar to the special carbohydrate diet. I guess good for people who the SCD didn't cure and whose symptoms are worsening? Certainly worth giving it a whirl.

Re: CRYING MY EYES OUT, PLEASE HELP

Wed, 10 Mar 2010 07:40:18 +0100

Author: -BugJemm-
Forum: Other

I was in a similar situation a few weeks ago. My indeterminate colitis had flared after a small reduction in the dose of my azathioprine and I felt lousy - joint pain, exhaustion and brain like cotton wool.

I'm a self-employed writer and it's important that I deliver work on time and that it's of good quality else I don't get more work in the future. I was writing the type of piece I'd written many times over the last 10 years but the cotton wool posing as my brain meant I couldn't focus or get my head around what I was supposed to be doing. After five days of bashing away at my keyboard getting increasingly desperate I too ended up crying my eyes out. This client gives me half my work and half my income, so this was a big deal for me.

After a lot of tears, a lot of internal debate and some wise words from my husband, I rang my client and explained. She took back my unfinished piece in the state that it was, cancelled another job I had lined up and told me to rest and let them know when I was feeling better. It felt like a huge weight had been lifted from my shoulders. I was able to go to bed, rest until a return to my usual dose kicked in and I gradually started to feel better. I've had lovely emails from the client checking how I'm doing and wishing me well and telling me how much they miss me and can't wait to have me back. And I'm now feeling 100% better although not yet quite back to my normal.

I understand why your family think that you should keep it quiet but I also think they're wrong. Your uni will have dealt with this kind of thing before and it's better to be honest so they can support you than to battle on alone - perhaps submitting a substandard assignment that gets you lower marks than you deserve. Please talk to someone there - I wish I'd done it sooner.

Good luck x

Re: CRYING MY EYES OUT, PLEASE HELP

Wed, 10 Mar 2010 01:32:37 +0100

Author: scaj10
Forum: Other

Yeah, I have told them. They think I shouldn't give in and shouldn't tell them. All this time, only my direct family has known about the colitis and nobody else. They don't want anyone to feel sorry for me and they don't want it to potentially go the other way and be held against me. They're completely against telling the university, which has put me in more of an impossible situation because I don't know what to do now. I'm just going to work through it, work like mad and then if I need an extension, I'll be forced to tell the university because I won't have another option. I've started to see that as a last resort now because it would be quite awkward telling them and I'm not convinced they'd fully sympathise with my situation. Who knows. All I know is that I want to do well and if I feel I can't meet the deadline and my health is compromising this, I'm going to have to act on it.

Obviously stopped crying now and feeling a little better but I really need to think through what I'm going to do. It's not easy and in a way, I don't want the university to know. They'll never look at me in the same way again and it would be awkward. Still, sometimes you have to swallow your pride and ask for help and I understand this. I see it as a secret though that I don't want to reveal. I never wanted the university to know and I want to be treat the same as everyone else, but without evidence and a strong argument, I'd never get an extension. If I don't tell them, I simply won't get one and it's about weighing up which is more important. I'd rather ask for help really than compromise my marks certainly. No doubt about it. Just wish there was another way to get the extension without revealing I have colitis. I'm not particularly ashamed of it but it's something I hate talking about and like to forget and completely block out of my mind.

Really appreciate all the advice given so far =) I hope they really would be understanding. I certainly don't want sympathy but an extension to get me through this hard time would certainly be welcomed.

Re: CRYING MY EYES OUT, PLEASE HELP

Tue, 09 Mar 2010 23:25:28 +0100

Author: midjet
Forum: Other

scaj10. I know it's scary and you want to be strong and independant but you are not well at the moment and that is one of the things the tutors are there for - to help you get through the course.

As you have said you have not missed lectures and have worked really hard over the rest of the course so far. Be kind to yourself and relieve the stress a bit by sharing with your uni. They WILL help you and won't throw you off the course. It is not sympathy that you are after - it is a bit of help over a rough time and everyone gets them with or without illnesses.

Have you shared with your family how you are at the moment? If so what have they said to you? My bet is that they are saying the same as the rest of us.

Take care - deep breath and try not to panic. It will work itself out.

Re: How old is everyone?

Tue, 09 Mar 2010 22:46:20 +0100

Author: nickyd101
Forum: Coping with Colitis

I'm 42 now - diagnosed 7 years ago. Been on and off with symptoms but a definite starter for me is quitting smoking. Packed in again December time and started flare up like a good 'un. On predfoam and colazide 3x3 per day. Wasn't seeing any improvement but 4 weeks ago went to see acupuncturist/trad chinese medicine practitioner. Gave advice on diet, relaxation as well as the pincushion. After one week started seeing a benefit which has continued thus far. I'm making wholesale changes to diet - no wheat, no dairy, no sugar - avoid fruit juices. Certainly feeling a whole lot better with more energy.

Best wishes

Re: Time to think about alternatives

Tue, 09 Mar 2010 22:37:22 +0100

Author: suenew61
Forum: Other

Hi Aimee
So happy that things are turning round for you!!
We haven't increased from 1 of VSL/bimuno per day at the moment because my daughter seems completely settled after finishing her pred, and we could then step it up if she showed any hint of a slide. She had increasing symptoms for only a couple of months before things went critical in November and very nearly went straight to surgery, but after finishing her pred. she seems to be holding remission with the pentasa, diet and supplements we have in place. I am hopeful that by tackling the illness from several directions at the same time will provide the best chance of pushing the colon back towards healing and normal function.

Re: Infliximab vs Surgery

Tue, 09 Mar 2010 22:33:15 +0100

Author: gingerboyreg
Forum: Surgery

Hey hayden

I had my op in Novemeber and currently waiting for my reversal. I had Ifliximab, it was awesome...to start with! I had no side effects, I was on no other drugs and all was good, the second batch was pretty good, I was going 5/6 times a day but still alot better than without, the third time however I had skin issues-massive rash, which wasn't pleasant. The fourth time...didnt work-plain and simple, didnt touch the UC at all.
I had put the OP off for 13 years, I knew it was going to happen and I was told i couldn't try anything else as I had been down every road so i gave in.
I'm afraid I'm not one of the people who is happy after the op. The sooner i get the reversal the better, there are many stories on here about how great they felt after and how it's great not to need to run to the bathroom which is true but life is different. You will be able to do pretty much everything which is great however I play rugby and this is the one sport (maybe boxing/cage fighting too!-lol) that you can't do.
So i guess it's really whats best for you, I do agree with Rita its great going to cinema and not sitting on the edge...just in case. I have not seen my specialst for 3 months but I'd rather see him weekly and play rugby on a Saturday!!!!
It doesnt look like many of us are lucky enough to find the right cocktail to keep us in remission forever so it could just be the case of putting the Op off!? As I'm sure someone else will tell you the decision depends on you and what you want.
Hope whatever you decide that it makes you happy as that at the end of the day is all that's important-Good luck
Reggie

Re: Omeprazole could this be a cure for ulcerative colitis

Tue, 09 Mar 2010 21:39:11 +0100

Author: fabglamourqueen
Forum: UK

What works for some doesnt work for others but touch wood Im still in remission. Im not taking any other drugs now for my u.c although I was told to take asacol to keep things calm. May be im chancing my luck but Im sticking with 4 20mg omeprazole a day and so far so good, although Im waiting for a flare up I just cant believe im in remission. Thought it was too simple that omeprazole could be a cure just got so excited and wanted to share it with others.

Re: Ups and downs, am I coping, not too sure.

Tue, 09 Mar 2010 21:10:23 +0100

Author: alannah13
Forum: Other

hi joseph, im sorry u are feeling fed up with this disease, i too am worried about the future and the prognosis of this disease, i am currently taking azithroprine 150g, pentasa x 8 and prednisolone around 7mg at present, take vits and vsl and anything that i think may help, but am scared as am unable to get off the steroids, i know this is damaging long term been on them along time around 3 years, really scared,have been on around 6mg avering over 6months daily. did get down to 1mg and nothing for 1 week but then my tummy starts hurting rumbling start seeing mucous so then nipp in bud with 10mg again, this patten i keep repeating its resulting in me only going for 1 bm each morning which is good i know but i being helped with steroids every day. my question is what is the alternative, what is the safest thing to do, do i keep taking damaging drugs, or do i have rotten bones and diabetes 10 years down the line, im sorry i cant be of any help but just to let u know u are not alone in yr worries.

Re: CRYING MY EYES OUT, PLEASE HELP

Tue, 09 Mar 2010 19:53:39 +0100

Author: scaj10
Forum: Other

I'm terrified. I don't know how they would react to it or if it would be held against me. If they wanted to throw me off the course, I'd argue i've never missed a lecture. So many peopl on the course just don't turn up. I work incredbily hard and am dedicated. I hate doing things last minute and hate being in this position. I'm tempted just to not tell them but I think it would worsen the mark I ultimately get slightly. Nobody outside my immediate family knows. I don't want sympathy and I don't want to think of it as a disability. In my eyes i'm strong and can do anything I set my mind to. Even my friends don't know. I don't want sympathy, I get by by just forgetting I even have UC. I used to be well most days so was able to do that, but not recently.

I don't know what to do. I'm scared.

Re: CRYING MY EYES OUT, PLEASE HELP

Tue, 09 Mar 2010 19:48:59 +0100

Author: suenew61
Forum: Other

Hi scaj10

First there is no way the uni will throw you off the course for not telling them about your UC!
Normally they ask about health only to make sure they can offer the support for any special needs you might have, or if the disability would make it impossible to work in the professional career linked to the degree e.g. medicine.
U.C. will not stop you having any career you choose - because you work hard and have already coped so well with so much already.

Please do not let this get you so distressed - the uni will be supportive and a few late assignments will not be a problem - I know you normally get it all done (the tutors will take that into consideration) and for other students lots of assignments are handed in late!

You need to visit the doctor first to get meds. and perhaps an urgent referral to the local gastro. consultant. Your bleeding is probably from the rectal stump that was left after your surgery at 11 - and you can still use the normal meds (enemas/foams) to try and control if. As you have stayed with the bag this long if it will not settle you may need to consider having surgery to remove the stump.

You then have to decide if you want to talk directly to your assigned course tutor, or if that will make you uncomfortable there will be someone in student services who may advise how to get the extensions on your assignments. It may be best to talk to the tutors who set the assignments individually or you could write a letter detailing the circumstances and suggesting a timescale that you could complete them in. Don't feel you have to be perfect - as you feeling so poorly no-one could work to their best. By talking about it and hopefully getting treatment to settle the symptoms some of the dreadfull stress and pressure you have been feeling should begin to settle.

If it helps write down the list of jobs you need to do in the morning and then try to let it go. You need to rest tonight and not keep running in circles of worry. It will all sort out as CurleyEyes has said - the university has seen this kind of problem before and they will help you.

*Hugs*

Re: How old is everyone?

Tue, 09 Mar 2010 19:16:53 +0100

Author: CurlyEyes
Forum: Coping with Colitis

24 now, was diagnosed at 22.

flaring since June 08, bad times!

June 08?!?! I thought I was going nuts after one year!

Man that sucks.

Re: CRYING MY EYES OUT, PLEASE HELP

Tue, 09 Mar 2010 19:15:10 +0100

Author: CurlyEyes
Forum: Other

Firstly you need to calm down, stress just makes your symptoms worse.

Secondly, I'm in the same boat as you. I am in my second year of uni and I didn't put it down on my application form that I had ulcerative colitis. When I started to get behind with work I explained the situation and everyone was lovely and sympathetic, you should do this too.

Find a tutor you get on well with, or try to access the disabled students centre if you can and sit down and tell them the whole story. They aren't allowed to kick you off of your course for this. :)

Re: Sore bottom

Tue, 09 Mar 2010 19:00:41 +0100

Author: midjet
Forum: Other

I have a perfectly nice bottom when its not red raw or exploding every hour.

That's the problem Ange because if it's anything like mine it is red raw and exploding every hour.

I now need to go and bleach my eyes from the inside out to try and get these images away.