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Anyone with ulcerative colitis - how is yours "managed"?

(17 Posts)
pollywollywoowah Fri 08-May-09 21:02:39

I was diagnosed in December and given Asacol suppositories. Worked fine but within days of stopping them I'd be back at square one in terms of symptoms, even after a month of 3 times a day useage.

So I was prescribed Pentaza (or is it Pentasa?). I found these were more "unpleasant" to use, and again, after a few days of stopping them, I'd have symptoms again, even with gradual withdrawal. So I have now been given Olsalazine tablets to take orally twice a day as well as the Pentaza every night. I loathe using the suppositories almost as much as having the symptoms of UC in the first place but it would be ok if I knew it was for a certain period then I'd be able to feel normal again for a while.

Basically I've been having a pretty much permamant bout of UC since August and am quite fed up of my bottom I feel dirty and totally unsexy and worn out. Although my 2yr old DS and 7mth old DD may have something to do with that too.

I have a sigmiodoscopy later this month which I am really looking forward to . . .

So after all this waffle I was just wondering how other people with this condition manage their symptoms and how long it took after your diagnosis to get it under control. Apparantly my case is quite mild but I feel like it's taking over my life at the moment.

MegBusset Fri 08-May-09 21:13:45

Hi, I was diagnosed with UC in about 2004. It was a mild case but I felt very run down and lost a lot of weight. I was prescribed prednisolone suppositories but hate hate hated taking them and they made me feel awful so I stopped taking them and went to a nutritionist who recommended a wheat-, dairy- and caffeine-free diet while taking liquid vitamin, mineral and omega-3 supplements to increase the amount of nutrients I was getting.

Within a couple of weeks my symptoms had improved enormously, soon they were basically gone. Now I only get flare-ups when I am ill and/or stressed and usually the symptoms go in a few days.

Now I am NOT recommending you stop taking your medication, and the changes in diet might not make any difference to you, but it seemed to work for me.

Also would recommend contacting the NACC for help and advice, and this book for lots of info.

Lots of sympathy, it's a horrid illness and I hope yours clears up very soon.

blushingm Fri 08-May-09 21:16:54

one of my best frends was diagnosed about this time last year - she was on oral seroids for a while but not takes tablets in the morning and at night but i can't remember what they are called at the moment - i know she has to have regular blood tests whilst on them

she's never had to do suppositries i don't think - she definately would have said

superdenki Sun 10-May-09 02:45:26

DH was diagnosed in 2006 after years of on and off episodes. he takes 3 Asacol tablets in the morning and 3 at night. He also has asacol foam enemas in case of flare ups but it's generally been quite stable since diagnosis. It actually got a fair bit worse when he packed in smoking as smoking weirdly is quite good for clearing up the symptoms - not so good for the rest of your general health though, obviously. am sure you will be able to review your meds once you've had the sig. procedure.

bellavita Sun 10-May-09 19:07:15

DH suffered with UC for many many years with flare ups becoming more and more often and stays in hospital getting more frequent and yes, he gave up smoking (the 2nd time) ten years ago and his health just got worse. The doctor did say to him he should not have given up smoking as he did (just stopped) and that he should have been weaned off the nicotine with patches etc.

He did all the drugs, enemas, sigmoids etc etc, was prodded, poked, given blood transfusions... seeing your lovely 5ft 11" DH at 7 stone and barely able to move ain't nice.

DH never changed his diet as I think then, there did not seem to be any info on this. Funny thing is he did say to me on the 6th May - did I realise it was 7 years to the day since he had his 2nd lot of surgery (now bowel free).

He does a lot of voluntary work for the IA (in fact he is away this weekend with the national committee) he also moderates their forum and speaks to people/relatives with the condition or who have had or about to have surgery.

The website (NACC) that Meg recommended is a good one and they should be able to put you in contact with a local support group should you want to go down that road?

If you need any more help - he would be only too happy do a reply on this thread for you smile

I hope you start to feel better soon.

(I always knew though when DH was on the mend from an attack because he used to get the munchies big time and it would cost a fortune for the next few weeks with the shopping getting different things in that he might fancy eating).

pollywollywoowah Tue 12-May-09 12:34:25

Thanks for all your replies. Bit of a mixed bag of experiences really. I hope it gets sorted after the sigmoidoscopy hmm

BlaDeBla Wed 13-May-09 08:42:28

I was diagnosed in 2007, in my early 40s, so quite old to get started with this horrible disease. I am on Asocol, 3 twice a day, and so far I have not had too many problems. Sometimes I lose quite a lot of blood. I will prob have a camera test late this year.

pinkcake22 Fri 22-May-09 16:13:17

hey polly feeling for u at the min is a nasty disease that does put your life on hold for a while, hopefully not too long for u.
i was diagnosed in 2004 when i was 17, had all the tests an been in hospital cus of it. i started of on oral steroids which cleared it up fast but is a strong drug and lots of side effects eg extreme mood swings, big moon face! hairy back etc from male hormones in drug! also extreme hunger, weight gain and even started to get hair on face warewolf style haha.

i am now on azathioprine and asacol. i have tried alternative meds and also read lots of books and articles so pls ask me anything if u need to!

ADealingMummy Sat 15-Aug-09 21:06:28

I was diagnosed with UC a few years ago, after having my bowel investigated. I am on mezaline suppositries , which I have every two days. If I have a flare - up , then I have steroids (foam enema), which do seem to clear it up within a week.

During a flare up , the cramps are more painful than contractions !and i'm on the toilet for a lot of day with diarhea. I am unable to leave the house , and DH has to help me with our 2 year old. Luckily the steroids do work.

Bondwife Sat 22-Aug-09 00:18:41

OMG I nearly cried when I saw this thread and had to join - I have UC for the last 10 years and have been very lucky apparently it is quite mild compaired to some. After being on alot of drugs some oral some not I managed with the help of a Doctor (not present Dr, Dr now retired) who was a specialist, to control it with diet for the last 4 years - dont ask me how - it took so long to work out what works and what doesnt and how to control flare ups. Then I gave up smoking 3 months ago - after reading a lot of studies I wished that I hadnt as it seems that according to American studies it actually helps - no wonder my doc at the time never mentioned my smoking and when I did ignored any comment!

It seems that my body doesnt like being pregnant all that much (Im at 6 weeks)- because of the UC flaring up when I became pregnant it has inflamed the bowel and then agravated my ovaries. The ovary pain is quite severe at times (had an internal scan yesterday as the pain was so severe they thought the pregnancy was ectopic) and has me doubled up in agony at some points and will continue unless UC subsides.

My present doctor however is reluctant to prescribe UC medication as I havent been on it for ages and is worried that it will have a negative effect on my pregnancy - has anyone else had active ovaries or related problems - I cant find any 'net' info but it is apparently very common. I am in agony and am constantly bursting into tears when at home - to make matters worse I started a new job 8 weeks ago and cannot tell them I am pregnant yet as I am on a 3 month trial so am having to 'put on a brave face' and disappear to the toilet when it gets too bad to cope with.

Sorry to winge but it feels so good to talk to people who will understand, my hubby is very good but I dont think anyone else can understand who hasnt got UC and the problems it can cause. It would just be really good to hear some advice if anyone else either started a new course of meds when pregnant or has an active ovary (or simular). This is our first pregnancy and I really would like to enjoy it instead Ive turned into a crying wreck

bellavita Sat 22-Aug-09 00:56:35

Bondwife - it was my DH who suffered with UC so he obviously cannot comment on being pregnant with it, but have you looked at the forum boards on this site? I am sure there will be someone in a similar situation to you.

FWIW - DH gave up smoking which was obviously the wrong thing to do as he just stopped (a 20 a day habit) and he had a terrible flare up. When he went to the gp, they said he should have gone to them first as he needed to be weaned of the fags with patches or similar rather than just stopping.

I am sure he knows someone through the forum boards that has been pregnant.. we are on holiday at the moment (brought the laptop which has been a godsend - finding out where to eat etc etc), but I am sure he would be more than happy to point you in the right direction. He is heavily involved in the IA.

bellavita Sat 22-Aug-09 01:01:50

DH has pointed you to here which was a talk given by the Specialist Nurse from St Mark's hospital (London) - they are like world leaders in basically matters of the bowels. This was given at an Information Day last November that DH attended. If you scroll down the slides, it gives the info on pregnancy and drugs.

Hope this is of use to you and gives you the amunition you need to go back to your gp.

Bondwife Sat 22-Aug-09 16:51:14

Thank you so much - its so nice of you x I will let you know how I get on

Luckywhite Sun 23-Aug-09 00:30:29

Hi there, I've just joined Mums Net so this is all very new so apologies if I'm not quite up to speed with accronyms etc.

I completely sympathise with all who suffer from this painful disease. I was diagnosed with UC about 10 yrs ago (29yrs old at the time). I've been very lucky and only had a few bad flare ups over the years. I was prescribed Asacol 2x400mg tablets in the morning and 1x400mg in the evening plus colifoam (rectal steroid foam) if I do have a flare up (bad stomach cramps and rectal bleeding) which normally settles it quite quickly.

Unfortunately, I managed to get food poisoning in March this year (camphlobacter) which kicked started the UC. My consultant started me on a 5 week course of steroids which instantly stopped my symptoms which was fabulous (after 2 hospital admissions and running to the loo about 20x a day for 4 solid weeks)no kidding blush! However, my symptoms start to return and are as bad as ever 3 weeks after stopping the steroids. I'm now on my 3rd course of these horrible things and have doubled the Asacol meds in an attempt to fix it once and for all angry, to make life even more difficult I am desperately trying to start IVF treatment in the hope of becoming a Mum grin. I realise this is now moving onto a new thread - sorry! My first try had to be suspended due to the food poisoning and I've been told that I can't restart treatment until I'm well again and off the steroids.

Just wondered if anyone has had a similar experience with food poisoning and UC hmm. If so, any helpful tips or suggestions would be gratefully appreciated. Has anyone tried pro-biotics for example?

Thanks

Bondwife Sun 23-Aug-09 08:00:37

Thank you Bellavita - the information you gave me was fantastic - I now feel armed to return to the docs - Please thank your husband for me and I hope that you enjoy your holiday x

Luckywhite - Im new too Im lucky that I havent had food poisoning and I hope that someone can help you with that but I can not eat or drink anything with pro biotic in it(that includes spread and yogurt)as it causes a near instant flare up but I think it is different for everyone. I wish you luck with the IVF x

Luckywhite Sun 23-Aug-09 10:36:37

Hi Bondwife - thanks. I hope things start to improve very soon for you too. Good Luck X

bellavita Sun 23-Aug-09 16:56:00

I don't know whether you ladies have seen this document but it covers the issues with pregnancy and IBD pretty well.

Bellavita's other/better half

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