Ulcerative Colitis Forum

Re: has anyone here tried
Fri, 30 Jul 2010 21:25:38 +0200
Author: midjet
Forum: UK

Try using the search facility on the medication page. There have been lots of posts about aza there and you should find all the information you are wanting to know there.

Re: Meds stopped working-does this happen often?

Fri, 30 Jul 2010 18:12:41 +0200

Author: strawberry
Forum: Coping with Colitis

[quote="pinkle82"]Hello, firstly, dont panic, the black mucus can be a result of the suppositories, I used to get it almost daily when i was on pentasa suppositories, its a sort of translucent black, a bit like watery treacle?

Thanks - I specifically asked GP if black mucus was a side effect of asacol and they said it wasn't a side effect - it must be blood. Am very pleased that it can in fact be from the suppositories!

Re: Meds stopped working-does this happen often?

Fri, 30 Jul 2010 17:24:37 +0200

Author: pinkle82
Forum: Coping with Colitis

Hello, firstly, dont panic, the black mucus can be a result of the suppositories, I used to get it almost daily when i was on pentasa suppositories, its a sort of translucent black, a bit like watery treacle?

Also if the GP is suggesting steroid foam enemas, they may help in the mean time, until you see the consultant, the foam isn't like taking oral steriods, it foam works at the site of the inflammation in the colon and hardly anything is absorbed by the rest of your body. I used predfoam for a long time and had no side effects, its just a bit fiddly to get the hang of!

Im sorry your meds arent working- you could just be flaring up a little more, but try not to panic- you did the right thing getting in touch with your GP, it may be that the suppositories are just not reaching the bits they need to, in which case its very possible that the consultant will suggest the enemas as a next step.

Hope it all goes well!
xx

Meds stopped working-does this happen often?

Fri, 30 Jul 2010 17:10:54 +0200

Author: strawberry
Forum: Coping with Colitis

Hi all
Sorry to post yet another message on here but I dont know who else to ask about this.
My meds seem to have completely stopped doing anything at all - does this happen to other people?
To start with the asacol suppositories I was precribed seemed to be working and I thought great! I had just about forgotten what normal was supposed to be like. However, even though i have been taking them properly and keeping them in they seem to have completley stopped working and also I now have black mucus. I have been taking them for 8 weeks and I think they started to lose their effect about 3 weeks ago. I called my GP who said they would ask consultant if this was OK or if I should be seen sooner (still haven't seen the gastro consultant at all yet - appointment end August) - haven't heard anything back so my guess is that I'm to wait.
My symptoms are really mild compared to other people on here and I can cope with my symptoms pretty much. I'm just a bit worried that the meds seem to be having no effect anymore and I now have this black mucus!
GP did mention that could try pred enemas but I'm scared of the effects of steroids so would rather see the consultant first to see what he says - has anyone had any side effects with the pred enemas.
Thank-you

Re: Pregnancy, UC and the getting the docs to understand

Fri, 30 Jul 2010 15:31:42 +0200

Author: stargirl
Forum: Pregnancy

Hi all

I suffer from UC and my doctor didn't mention to me any concerns about giving birth naturally and the risk of tearing for future procedures. This may have been because there is not really any cause for concern. I gave birth nearly 6 months ago naturally. I did tear but only slightly and this is normal. They stiched me up (2 stiches) and you wouldnt even know. C sections are seen as the easy option (and when you have given birth you can see why) however they come with alot more risks for both mother and baby than a normal birth. This out weighs the need for a surgical procedures you may or may not need due to your UC in the distant future. I say dont worry enjoy your pregnancy and stress can play a big part in UC symptons. Good luck!

Re: Advice? On
Fri, 30 Jul 2010 15:24:04 +0200
Author: stargirl
Forum: Pregnancy

Hi,

My persricption is 800mg of asacol 2 - 3 times daily and has been since I was diagnosed January 2009. I planned a pregnancy after my diagnosis and when my symptons significantly improved. My son was born Feb 2010 and is now nearly 6 months old. I continued to take asacol throughout all my pregnancy. As I was newly diagnosed I still suffered from bouts of bad symptons mainly when I was about 3-4 months pregnant. I went back to my doctor who said I could also use the asacol enemas (my UC is mainly lower/rectum). I had terrible feelings of guilt taking this whilst pregnant in addition to sometimes having up to 5 800mg of asacol a day. The doctor said that I was more at risk of causing harm if I was unwell rather than trying to keep it under control and get better. Thankfully the enemas sorted me out and I was well again. Pregnancy hormones naturally make you feel better and I was able to drop down to 2 800mg tablets a day. My son was born naturally at week 39, and totally healthy. He has had no reactions to me taking asacol and this is mainly because asacol is only released when it gets into your colon so it bypasses you baby and your blood stream. My only warning is that you may experiance a flare up once the baby is born, all the nice hormones have gone and I suffered again when Riley was 3 months old. The doctor said this is quite normal and all I had to do was up the asacol/enema's again until the flare up has gone down.
Your perscription is lower than mine so don't worry asacol made no difference at all for me and my son. Good luck with everything.

Re: Stains on loo seat

Fri, 30 Jul 2010 07:58:00 +0200

Author: lavenderhoney
Forum: Medications

Hello Wightgirl, thanks for the reply. I'm guessing now it's not the meds as there would have been lots of replies. I wonder what it is?

LH

has anyone here tried Azathioprine?

Thu, 29 Jul 2010 22:26:38 +0200

Author: imran_1978
Forum: UK

Hi all,
I'd like to know if anyone has tried azathioprine as my consultant suggested it to me. I've been on prednisolone for the past 7-8 weeks and no real improvement, still going to the toilet 4-5 times a day and experiencing bleeding with every stool. I've also had to up my daily dose of Pentasa to 8 tabs a day.

I haven't conducted any research on azathioprine, although was given a pamphlet explaining a bit about it, apparantly, its used for patients undergoing transplants, but in smaller doses can be used effectively for suffers of colitis and crohns.

If anyone has any information to share it would be great :)

thanks,

Imran

Advice? On Asacol Planning a baby

Thu, 29 Jul 2010 17:01:29 +0200

Author: Karen1980
Forum: Pregnancy

I have recently been diagnosed with UC after 3-4 years of suffering. Two weeks ago I starting taking asacol MR 400mg twice a day. This stopped my UC symptoms and I feel better than I have done for years.

Unfortunately I am now experiencing bad headaches and random joint pains every few days. The pain is quite severe and in a different place each time. It has been in my shoulder,my upper back, fingers and hip. It gets worse during the night but completely resolves when I wake up next morning! I have never experienced this before starting asacol. Has anyone else experienced this?

I would like to have a baby within the next year but am concerned about the effects of this medication on my baby. Has anyone been through pregnancy on asacol?

I would love some advice. Thanks x

Advice? on asacol with body pains - want a baby

Thu, 29 Jul 2010 16:56:00 +0200

Author: Karen1980
Forum: Medications

I have recently been diagnosed with UC after 3-4 years of suffering. Two weeks ago I starting taking asacol MR 400mg twice a day. This stopped my UC symptoms and I feel better than I have done for years.

Unfortunately I am now experiencing bad headaches and random pains every few days. The pain is quite severe and in a different place each time. So far it has been in my shoulder,my upper back, fingers and hip. It gets worse during the night but has completely resolved when I wake up in the morning! I have never experienced anything like this before starting asacol. Has anyone else had this?

I am a newlywed and would like to have a baby within the next year but am concerned about the effects of this medication on my baby. Has anyone been through pregnancy on asacol?

I would love some advice.
Thank you x

Re: dealing with colitis

Thu, 29 Jul 2010 14:42:25 +0200

Author: torquell
Forum: Coping with Colitis

LOOKWHOTALKING ......Glad to hear you are improving and at least you have a part time job.

Is it now over 40 years since I had my first flare up of UC.(distal colitis) when I was 25 years old.

First flare up was by far the worst ,fever,weight loss,sometimes alarming blood loss, had to give up my career and was hospitalized for 3 months, in those days the preferred treatment was surgery.
However I did not want surgery so was given the option of cortisone enemas and Salazophrine tablets.
Fortunately I became much better, have continued to take mesalazine regularly ever since with cortisone enemas as a backup.
There are often long periods when I'm more or less well.

When a flare is starting I use cortisone (as little as possible),get loads of bed rest,generally be very kind to myself ,saunas, hot baths,have a hot water bottle on my tummy,
Eat foods which are very smooth,use a juicer for vegetables,minimum saturated fats,plain yoghurt ,something like Fybrogel for soft bulk,since there is a lot of repair work going on take extra protein (plain Complan).
I go for walks, get angry and curse out loud (making sure no ones around ) at not being well, let it all out.

Re: Stains on loo seat

Thu, 29 Jul 2010 13:48:14 +0200

Author: Wightgirl
Forum: Medications

Same here. If you don't spot it straight away it seems to stain. We had to change ours too!

Re: UC protection under Disability Discrimination Act - any advi

Thu, 29 Jul 2010 13:28:33 +0200

Author: trixie1960
Forum: Coping with Colitis

Hi, an update on the medical in relation to tribunal. Employer has conceded that I am protected under DDA after reading medical from specialist. They are not accepting discriminating against me on this ground though so this will be questioned at main trial. If anyone has to go before a medical make sure it is a specialist in this area and not a general medical by say Occ Health. The specialist is well aware of all our problems and issues. Will update at next juncture.

Re: how long does cyclosporin take to work?

Thu, 29 Jul 2010 10:19:51 +0200

Author: jsandwich
Forum: Medications

well I have fingers and everything else crossed ,looks like its starting to work

she didnt have to get up in the night for the 1st time in months

hope it continues ,back to clinic tomorrow ,the plan is to move on to aza at some point

Re: Recently diagnosed UC

Thu, 29 Jul 2010 08:50:15 +0200

Author: gravillep
Forum: Coping with Colitis

Hi there

Thanks so much for that dont be afraid to contact me at all becouse all the help I can get about this horrible condition really helps I am a new sufferer and i do not know much about this thing at all I really dont it seems that most foods i eat just come back up and i get very de-hydrated very quickly so as much info as posible will be read and replied too I promise

Re: Hello, another newbie

Wed, 28 Jul 2010 23:47:31 +0200

Author: ragingwitch
Forum: UK

Thank you Catherine.

Doctor doubled my asacol and signed me off sick from work, something I've never done before; I usually just suffer it! Let's see if it does the trick!

Re: UC alternative therapies - accupuncture?

Wed, 28 Jul 2010 23:16:07 +0200

Author: crampingmystyle
Forum: Coping with Colitis

DO IT!! What's there to lose?? Well a few quid...but if it works then it's sure as hell worth it

Re: People who had UC without a diagnosis for many years.

Wed, 28 Jul 2010 22:59:40 +0200

Author: HomerB1965
Forum: Other

Hi readers, Glad to see I'm not alone.
I have had the condition for 15 years or more. Started with the usual nasty symptoms. I had to colonoscopies with in a short time, found a few polyps and the results thank goodness came back as not malignant.
Now my dad had a colostomy in his late 40's and he succumbed to cancer ( brain ) a few years later. So I'm terrified I'll be heading the same way. I'm that age now.
I was originally prescribed a long term medication which I was told I may have to take for the rest of my life, but it gave me low grade head aces. Having had enough I tried the homoeopathic root and became convinced and probably proved that I could control my symptoms with a high fibre diet and I ditched the meds. I had my regular sporadic bouts of server symptom erupt at the most inopportune time, like when I was working and travelling abroad. But I got through, usually a steroid doss for a few weeks. I had a stash of meds ( asocol ) with me most the time just in case. I get an attack as I call it now and again but I can honestly say I am lucky to be in remission for the most part. When the symptoms appear I up the fibre and avoid the nuts, salads, red meats, wheat, lactose etc. Usually have alot of wind and things settle down.
It has not worked this time and I have been caught and have a good case of full on symptoms at the moment and have just been put on a course of steroids and have a scope booked in a couple of weeks. I'm not looking forward to it. I was told that long term untreated condition can be the growing bed of all sorts of nasties. I'm Scared I guess. Its easier to have my head under the sand then face up to some thing awful being found. On the other hand I may just have UC and that's it. I'll have peace of mind then.
I have been lucky and me old high fibre diet will be back in full and I will try not fall off the waggon. I think a thick book of good one page jokes will do nicely in the toilet to look at, that's if I can sit without been hunched over in spasm. Why me?
At least I've only been a few times today, prednisolone kicking in. Boy I'm gong to cheer that first firm well formed stole. What a celebration that's going to be.
Cheers all.

Are there any ways to prevent or stop a flare up?Please help

Wed, 28 Jul 2010 21:24:04 +0200

Author: scaj10
Forum: Coping with Colitis

I have had ulcerative colitis for four years now. I have a stoma and bag and a small piece of the infected rectal stump which will be removed next summer. I'm currenly at university and have two exams in a few weeks which I wasn't able to take a few months ago because I was getting quite bad flare ups during my exam week and wouldn't have been able to sit through them. Luckily I was able to complete the rest of my exams and did well :)

Anyway over the last four days i've been getting quite a few flare ups every day and by this I mean feeling 'sensitive', needing to rush to the toilet and the occasional loss of blood due to the remaining rectal stump and flare up. I take one pentasa suppository daily which normally keeps me well but I think I've been stressed about the two exams lately which is causing the flare ups. This normally happens to me when I feel stressed out. I've tried doing things to take my mind off it and trying to relax but it hasn't been helping. What would you advise for me to do please because being ill is taking up valuable study time and i'm really getting sick of feeling unwell

Re: Recently diagnosed UC

Wed, 28 Jul 2010 21:23:56 +0200

Author: parastoo_karimi
Forum: Coping with Colitis

Hi there,

Although the pentasa may have been successful you may have eaten something which has caused you to have a flare up.

I have awful UC to the point where no medications actually work for me as I seem to be allergic to most of them. And I have realised alot of the problem is the way I eat.

Its all about being careful with what you eat and making a list of what you can and cannot have. For example dairy products, high in fibre foods, red meat and vegetables. Personally I cant handle any of those which I have mentioned and have been sent straight to the bathroom with awful cramps, diarrhea and bleeding!

Keep being positive and if you have any questions please dont hesitate to ask. I have had UC for nearly 5 years.

Keep smiling :)

Parastoo

Re: Short term memory loss

Wed, 28 Jul 2010 21:03:13 +0200

Author: Jules1965
Forum: Coping with Colitis

my bowel is still all in there (unless I've forgotten something!)

Re: How often do you see your consultant?

Wed, 28 Jul 2010 19:50:08 +0200

Author: andyhebden
Forum: UK

Snap, I prefer to see the nurse!

Re: Exhaustion After Surgery

Wed, 28 Jul 2010 19:15:14 +0200

Author: lambiepie
Forum: Surgery

Thanks for your reply, Gingerboyreg. I actually began to feel more like myself around week six. I walk at a normal pace now and stand nice and tall! It just took longer than it did after my first procedure and I guess I expected the same recovery time and was disappointed and concerned when that didn't happen. I was telling a friend that I know another surgery is around the corner when I begin to feel like a normal person.....hopefully I can put the emphasis on my "healthy" life when this is over. I know that the final procedure brings its own challenges, but I'll just be so grateful to get rid of this bag and stoma, which gave me some problems the second time around. Good luck to you!

Re: Help!

Wed, 28 Jul 2010 18:55:29 +0200

Author: Pr-Pringah
Forum: Surgery

i cant imagine a trip to the GP would be a waste of time. it what they are there for at the end of the day.

Re: Relationships and Colitis...?

Wed, 28 Jul 2010 18:48:47 +0200

Author: Pr-Pringah
Forum: Other

But when I was around 21 I got diagnosed with UC (probably had it since 16/17 but was in the navy then and just didn't want to raise the issue). But also felt that I shouldn't make a fuss.

I really really really wanted to join the RAF, but they said that people with IBD are classed as being medical unfit and not suitable for military service. i was devistated, i couldnt be a pilot (not got the hamster power in my noggin) so wanted to be a load master or a weapons tech or something. now, im stuck in the office lol

My mother is convinced I have IBS and that my doctor is wrong, even though I told her I had to have a camera stuck up my jacksy to look for the UC!!

my mother is the same, she thinks its IBS because she has similar symptonms. errr, no!!! lol

Re: How often do you see your consultant?

Wed, 28 Jul 2010 18:43:17 +0200

Author: Pr-Pringah
Forum: UK

it all depends on the situation.

If my consultants see my condition as being at a managable states it will be every 6 months. once with an IBD and once with the consultant.

if i contact my IBD nurse and mention that im feeling rubbish and think im coming out of remission, that will every three months or whenever they can fit me in if i want to see an IBD nurse.

i dont know if its just me, but i prefer to see my IBD nurses anyway, less patronising and more down to earth. they will also see my consultant if they feel necesary anyway so its all good!

Re: Short term memory loss

Wed, 28 Jul 2010 18:38:11 +0200

Author: Pr-Pringah
Forum: Coping with Colitis

Hi Pr-Pringah, I am also in Plymouth!!

woop!
hehe your poor thing ...nah its not that bad here lol

B12 defficiency is quite common in those that have had parts of the bowel removed too? my nan has it, she had a re-section a while ago and has since been diagnosed with this. i think that B12 is absorbed through the bowel, i want to say large bowel but i have no idea if im honest. So would make sense if you were.

but hey, i may be forgetfull, but i at least im not forgetfull!

Re: Hello, another newbie

Wed, 28 Jul 2010 17:17:07 +0200

Author: chlohan
Forum: UK

Hi there, welcome to the forum and hope your appoinment went ok at the docs. Catherine

Re: Recently diagnosed UC

Wed, 28 Jul 2010 17:09:48 +0200

Author: gravillep
Forum: Coping with Colitis

I too have just been diagnosed with UC I was also on a lot of antibiotics for unrelated illness my Gasto consultant tells me that taking too many antibiotics could start this problem.

I am not sure what to do now as I was rushed into hospital with near kidney failure and very dehydrated the hospital put me on a drip and gave me potasium supplements I have just been disscharged to be looked after at home.

I need to know what kinds of foods i can eat that will stay down so if anyone has any tips or help they can give it would be very much appreciated.

Paul

Re: good hospital for surgery?

Wed, 28 Jul 2010 16:12:41 +0200

Author: zapbrannigan
Forum: Surgery

Anybody had surgery in leeds? I've been told i have exausted all meds & surgery is the option left. my IBD nurse recommended Mr Sagar just wondered if anyone had any experience of him before my appointment in 3 weeks.

cheers

Ulcerative Colitis Forum

Re: has anyone here tried Fri, 30 Jul 2010 21:25:38 +0200 Author: midjet Forum: UK Try using the search facility on the medication page. There have been lots of posts about aza there and you should find all the information you are wanting to know there.

Re: Meds stopped working-does this happen often?

Re: Meds stopped working-does this happen often?

Meds stopped working-does this happen often?

Re: Pregnancy, UC and the getting the docs to understand

Re: Stains on loo seat

has anyone here tried Azathioprine?

Advice? On Asacol Planning a baby

Advice? on asacol with body pains - want a baby

Re: dealing with colitis

Re: Stains on loo seat

Re: UC protection under Disability Discrimination Act - any advi

Re: how long does cyclosporin take to work?

Re: Recently diagnosed UC

Re: Hello, another newbie

Re: UC alternative therapies - accupuncture?

Re: People who had UC without a diagnosis for many years.

Are there any ways to prevent or stop a flare up?Please help

Re: Recently diagnosed UC

Re: Short term memory loss

Re: How often do you see your consultant?

Re: Exhaustion After Surgery

Re: Help!

Re: Relationships and Colitis...?

Re: How often do you see your consultant?

Re: Short term memory loss

Re: Hello, another newbie

Re: Recently diagnosed UC

Re: good hospital for surgery?

Re: has anyone here tried
Fri, 30 Jul 2010 21:25:38 +0200
Author: midjet
Forum: UK

Try using the search facility on the medication page. There have been lots of posts about aza there and you should find all the information you are wanting to know there.