Ulcerative Colitis Forum

Re: UC and contraception

Thu, 18 Mar 2010 07:27:54 +0100

Author: lavenderhoney
Forum: Pregnancy

Hello again.

Well, I spoke to the consultant about taking Cerazette and he said there's no issue with it at all as long as I use some other form of contraception during a flare up (the diarrhoea might prevent absorption) so that's a relief.

LH

Re: What job do you do ? how do you cope ?

Wed, 17 Mar 2010 21:19:07 +0100

Author: lozz1962
Forum: Coping with Colitis

Hi,

I work as a veterinary receptionist. So a loo always close. I have just gone back to work after 3 1/2 weeks off with a nasty flare up. My boss has bin brill. When I said I was reasonably well enough to return she told me to come in 11 - 3 a quieter time of day so I didn't get stressed out and to ween me back in gently So it's only bin 3 days now but mentally I feel alot better. (was going mad at home). Luckily my kids are 16 and 24 so quite capable of getting to work and school by public transport. I have a wonderful brother who drives 40 miles to help me when I'm in flare-up.

Hopefully changing my anti-inflammatories has done the trick. Time will tell.

to every1 coping with this illness

X Lozz X

Flare-up after surgery

Wed, 17 Mar 2010 21:04:49 +0100

Author: colitisKaz
Forum: Surgery

Hi,
I have a defynctioning loop ileostomy and had the surgery 3 years ago. I am now experiencing my first flare-up since the op. I'd forgotten just how much flare-ups hurt and am now booked in for another colonoscopy on Monday.
Has anyone else had flare-ups with a temporary bag? I think if anything this flare-up has made my mind up for me- I definately DON'T want the reversal that was on offer only a few weeks ago- I want it all out- no more colitis and a life back!!
Anyone with similar experiences please share.
Karen

Re: Daughter,15 operation on Friday, advice wanted please.

Wed, 17 Mar 2010 20:57:24 +0100

Author: colitisKaz
Forum: Surgery

Hi,
I have had the surgery myself. A defynctioning loop ileostomy. This was intended for a year to give my bowel a rest. It has now been 3 years and I dont plan on having it reversed.
Your questions- from my experience.

After surgery- she'll be awake but tired and not forced to do anything- for the first day or two the nurses will empty the bag for her. I couldnt even look, I lay on my side and slept and couldnt bring myself to look at it. I felt quite alone- my mum asked to see it and I said- you wouldnt sk to look at my bum! It really does take a while to adjust.
Pain wise- morphine drip- press the button as often as every five minutes so really no need to worry about the pain. I was on the drip for 3 days, then moved to oral morphine and within 5 days was back on normal painkillers.
I was walking the day after surgery- it feels a bit tight on the tummy and to start with the smell will put you off. The stoma nurse will make you look at your new stoma- name it if you like- mine is my little alien- it moves and seems to have a life of it's own! She'll guide you through everything, how to change the bag, what to look for and how to feel about it. I demanded to wear gloves when changing it for the first week or two and was then told- you dont wear gloves to wipe your bum, and then the penny dropped and I realised it was a part of me and something I had to get used to.
I was in hospital for 10 days, then had my mum with me for a week- no lifting allowed, its hard to sleep and get comfy and there will be leaks until you find a bag that suits you- but when you find the right one you'll stick to it!
Scarring- let me check- I have scars on my belly button- thats where one tool goes, then 2 small holes to the right side- these are covered by the bag anyway, and then there is your stoma, with dissolvable stitches. Scarring is minimal- I was shocked.

Good luck with the op- It may feel like the end of the world but believe me its just the beginning. Give her 3 months to go through the adjustment phase- believe me they are hard and there's no escaping it, but if she's anything like me I just needed to be reminded of how much pain I was in before- how fat I got an steroids, how much I was scared to go out. Now I do everything. Be prepared for accidents at night to start with- I have a pillow to prop me on my side so I cant roll on to my bag, but pretty soon you adjust. oh, and you may need to wake her for the first month during the night to empty the bag- this is temporary and does settle down- I can go 10hours now just dont eat after 6 for first month!

Hope i've answered some questions- I only wish I had someone to talk too when I had my surgery- i'm happy to help if I can at any point in the process.
Good luck
Karen x

Re: What job do you do ? how do you cope ?

Wed, 17 Mar 2010 20:56:16 +0100

Author: debhasuc
Forum: Coping with Colitis

Hi,
I work in a nursery, when i was flaring found it really hard to get to work on time as mornings were always really bad for me and i had to get ready plus my two boys needed to get to school and we only have one toilet (not good, as often i was in there a lot longer than planned and then we were all rushing!) . Generally i found once i had got out of the house i was ok for a while but when i was diagnosed i was having a bad time and was signed off from work for quite a while, not sure how it would have worked with me rushing to the toilet when i'm supposed to be looking after loads of 4 year olds! Work have been really supportive tho, will have to see how things go when i'm next having a flare up, thankfully at the mo i'm ok

i cant drink any alcohol(lager mainly) as it normally makes me flare up and makes me feel like ive had about 10 pints when ive had 1 anyone else get this

I always thought i was just rubbish! as a sniff of alcohol is more than enough for me - cheap date! (mind you usually i just fall asleep...) maybe i could blame that on the UC instead!

take care, Debbie

Re: What job do you do ? how do you cope ?

Wed, 17 Mar 2010 20:41:10 +0100

Author: davekelly
Forum: Coping with Colitis

I'm an electrical design engineer so I'm office based other thean a few meetings a week so when I'm in the office I know there's a toilet need so I'm cool. If I know I'm off to site I'll take a liperimide before an I'm sweet. I know liperimide isn't a great answer but it works great for me.

Hope ur ok dude

Re: Just found out i have colitis-Advice wanted

Wed, 17 Mar 2010 20:11:39 +0100

Author: davekelly
Forum: Coping with Colitis

Lol I'm sure you don't need to loose any weight, I bet your a hottie like me lol

I'm fine I always knew I needed the toilet and I work 80% of the time in an office so toilet I'd near thank god. But it hasn't change me any bit cause like I said I've lived with this for 8 years so it makes no difference but only to know a name for it.
Is yours that bad ur considering surgery?

Hope your cool like

Re: Just found out i have colitis-Advice wanted

Wed, 17 Mar 2010 20:04:10 +0100

Author: CurlyEyes
Forum: Coping with Colitis

No way only 21. Old head on those young shoulders. How are you getting on?
Not so brilliant. As I mentioned I'm not responding to treatment, and for the past month I've been throwing up as well! (though not often, about once a week) Doctor reckons it could be caused by over-using steroids.

However, I'm plodding along so far without needing to resort to surgery and all that throwing up is bound to be helping me lose the steroid weight.

How've you been coping since your diagnosis?

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

Wed, 17 Mar 2010 18:59:26 +0100

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

Thanks for the tip!!!
XXX

Re: Just found out i have colitis-Advice wanted

Wed, 17 Mar 2010 18:57:08 +0100

Author: davekelly
Forum: Coping with Colitis

No way only 21. Old head on those young shoulders. How are you getting on?

Re: What job do you do ? how do you cope ?

Wed, 17 Mar 2010 18:05:29 +0100

Author: zapbrannigan
Forum: Coping with Colitis

I work as a finance assistant, so office based which makes nipping to the loo nice & easy!

so i cope fairly well, work are pretty understanding so i try to keep them in the loop as to my status of how well i'm feeling, what meds i'm on, what the side effects could be etc. when i was diagnosed i printed of the 'for employers' information sheet from the nacc website which gave them more of an understanding which i think helped.

Hope you manage to keep coping (& wish we all didn't have to 'cope')

Jordan.

Re: Just found out i have colitis-Advice wanted

Wed, 17 Mar 2010 18:03:52 +0100

Author: CurlyEyes
Forum: Coping with Colitis

I agree with the meds lark but I must of have colitis for 8 years now and it's always been the same level of toilet trips etc. The meds having completely work but have sorted a little out. But like I said it's only ever been what I eat so if I eat pasta an things like that I'm normally fine with out meds.

Thanks again. How long have you had it for if you don't mind me asking?

Six years. I'm 21.

Re: Just found out i have colitis-Advice wanted

Wed, 17 Mar 2010 17:56:27 +0100

Author: davekelly
Forum: Coping with Colitis

I agree with the meds lark but I must of have colitis for 8 years now and it's always been the same level of toilet trips etc. The meds having completely work but have sorted a little out. But like I said it's only ever been what I eat so if I eat pasta an things like that I'm normally fine with out meds.

Thanks again. How long have you had it for if you don't mind me asking?

Re: Think I have made my mind up...

Wed, 17 Mar 2010 17:42:10 +0100

Author: midjet
Forum: Surgery

Ok had my appointment today and it went really well. He agreed that I am right to consider it and went through the pros and cons. Next step is to wait until things have settled down a bit more with this flare up so back in two months time for a flexisigmoid and then a colonoscopy to get the evidence together for the surgeon to assess.

He went through the possibility of the j pouch and rejoining after but said the option of what to do would be down to me and to weigh up the options at the time.

All in all a good day with a positive move to a better life hopefully and actually being awake instead of a junked up zombie.

Re: HIatus hernia

Wed, 17 Mar 2010 16:41:06 +0100

Author: Uncertain
Forum: Other

Hi Jane

I too suffer with an Hiatus Hernia which does give me a lot of acid reflux. For this I was prescibed Pantoprazole which worked well then I received a letter from our local surgery stating that due to the cost of he Pantoprazole they would need to change my medication to Omeprazaole which is not as effective. The hospital have rung the GP but they are reluctant to change it back again.

Thinking that stopping smoking would help with the acid reflux I stopped in September 2009. Suddenly in December i started with a flare up of what I thought was the Crohn's disease I had been diagnosed with approx 30 years ago. After a sigmoioscopy I am now told it is Ulcerated Colitis rather than Crohns but will not be absolutely sure until I get the biopsy results tomorrow. Does get me down a bit as I find it difficult to go out playing golf and even shopping at times. Did have nearly 20 years of fairly symptom free remission. Makes me want bto go out and buy a packet of ciggies but that would probably cause other [problems.

Did you have an Endoscopy for the hernia ? If so did the consultant not recommend any medication. There are a number out there I am sure they can provide you with one to help.

Good luck and keep trying. Unless people have suffered with either they do not understand what we go through at times.

Re: Just found out i have colitis-Advice wanted

Wed, 17 Mar 2010 16:37:15 +0100

Author: CurlyEyes
Forum: Coping with Colitis

I'm not sure if that's the norm.

For me I have to use the loo no matter what I eat, usually at the same times during the day (which makes planning easy I guess, but also results in a false sense of security! ) although some foods make it worse and I have been known to run to the loo not long after eating something naughty!

I didn't mean to scare you by saying it can get worse! I'm sure if you're responding to your treatment then you'll be fine.

I've been flaring up since March 09 and mine has steadily worsened because it's not responded to treatment. But that doesn't mean that when I go into remission and then eventually flare up again it'll still be worse. If you see what I mean?

I've never heard of the tablets you are taking but you say you haven't started because you're waiting for a party? Not taking your meds is risky as it can make your situation worse.

I am aware saying that makes me a hypocrite however.

Sucks about the pizza though, I can usually get away with pizza if I don't over indulge. I love pizza too.

Re: Just found out i have colitis-Advice wanted

Wed, 17 Mar 2010 15:09:05 +0100

Author: davekelly
Forum: Coping with Colitis

thanks for that. i didnt know it can just get worse :(

i never have these 'flare ups' it basically it only affects me if i eat something funny curry, pizza, sometimes bread and tomato soup and the main culpit is jalapeno pepeprs. if i have a few of them it may mean a trip to the toilet after 15min of eating, after that i'm fine. is this the norm of colitis?

the tablets are budesonide anyone used them before?

thanks for reading, everytime i speak to the prof at the hosp it just wanted to pill me up an get rid of me. its me that has to go in with a list of questions.

all advice, tips welcome

Re: tiredness &
Wed, 17 Mar 2010 13:01:05 +0100
Author: suenew61
Forum: Carers and Partners

Hi M
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 can be lost and a strong probiotic may ‘force’ a more normal population back into residence.
Many of the probiotics on the market contain lower levels of one or two bacterial strains. VSL3 has a much higher dosage of eight mixed species and as long as you build up your own tolerance (don’t jump in with massive doses immediately); the constant washing through with helpful bacteria may crowd out other more harmful organisms. 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 Bimuno – which is a prebiotic product that provides specific food/nutriets for the colonic bacteria and so also supports a more steady population
The basic food guidelines I follow are to include as much soluble fibre as possible while avoiding high fat/insoluble fiber/spicy/or foods that cause lots of wind. It seems to make sense that the more ‘normal’ you can make the bowel contents – the better the chance for healing and ‘damping down’ of the irritation/immune reaction caused by faeces constantly rushing through.
Sorry if this is a bit graphic but if you Google ‘Bristol Stool Chart’ you will get a range of descriptions (with pictures) from 1-7 of faeces. We found that some bowel motions might not be obviously one number e.g. 5 but a combination of loose/firm, and so we expanded the possible range to include 6/5, 5/6, 5, 5/4 and 4/5 etc. with the first number indicating the most dominant on balance. This made tracking food reactions more sensitive, easier, and a lot less embarrassing as she just noted numbers beside the daily food diary and we could then link it to what she had eaten the previous day. We found that after a new food was introduced, if it caused wind the resulting stool would be rushed through quicker and would come out more fluid e.g. when we introduced onions. Even if a food didn’t cause wind there was a definite pattern with speed/looseness if something didn’t agree e.g. sausage rolls.
Food types will not cause a person to get UC - that is a mixture of lots of genetic and environmental factors - but when having a flare it can make symptoms worse. Everyone has different reactions and so knowing your own personal good/bad items is very useful. If you start with a limited range of very reliable foods you can then check out possible irritants such as ‘dairy’ and gluten, then slowly expand.
All the best
Sue

Re: Just found out i have colitis-Advice wanted

Wed, 17 Mar 2010 11:38:56 +0100

Author: CurlyEyes
Forum: Coping with Colitis

I noticed you said you had parties to go to, it's not the same for everyone but alcohol is the worst thing for me when I'm flaring up. The next day is extremely painful, so I'd tread carefully if I were you.

Also, I was never told to avoid alcohol when I was on steroids, which ones are you on?

Colitis can get worse the longer that it doesn't respond to treatment, but it doesn't always. Also, many people live with the disease for years, even their whole lives, without needing surgery whilst for some it can suddenly deteriorate very quickly. It doesn't have to be a life changing condition.

From your post it would seem that you're responding well to the treatment? If so I wouldn't worry about any of the nasty stuff just yet and concentrate on getting better.

Just found out i have colitis-Advice wanted

Wed, 17 Mar 2010 11:22:40 +0100

Author: davekelly
Forum: Coping with Colitis

Morning everyone and hello,

little background for you all when i was 19 (now 27) i got gastroenteritis and since that i have aways had a funny tummy. i went the docs about 6 times over the next few years who basically put it down to IBS everytime. anyway late last year i went though a pepper eating stage and this really gave me the trots so back the docs to see a specialist. a week later i had a camera stuffed up my bum. looking at the camera going round the doc said i had some inflamations, and it was ulcerative coltis it looked normal and pink to me but hey i aint a doc.

anway i went home happyish knowing that it is treatable.
ok so these are the following drugs i've taken to date
colazide- which did improve it generally
same colazide but an emema-I took it a few times put i hated it
Steriods-Havent started taking them yet because i have parties to go to and it says no alc. But they are the slow release ones.

Anyway i wanted to talk to people with the same condition to get a feel what im in for and the best way to control it.
I'm normally ok throughout the day unless i eat something the doesnt agree with me. It doesnt flar up its basically always the same, if i have a curry i'll need to go the toilet but after that i'm ok. I have no real issues with alc apart from red wine. and sometimes pizzas are a killer too.
When i go out or have a meeting i'll take loperamide (then i can eat what i want and dont feel so much as a twitch) so i dont need the toilet but other than that its ok.

my doc didnt explain stuff too great so i wanted to know if it will get worse, are there foods/things to avoid. is it life threatening? can i lead a normalish life to a normal age or at one point does it suddendly get worse then i have to get surgery?

thanks for reading and hope people can make me feel a bit better.

Dave

Re: Iron Tablets.

Wed, 17 Mar 2010 07:21:18 +0100

Author: lavenderhoney
Forum: Medications

I don't know how my iron levels are now as I haven't had a blood test since leaving hospital. Seeing consultant today for check up so not sure if they'll do blood tests but I'm thinking I'll ask my GP to do a test in a few weeks just out of curiosity to see if the Spatone is working. Must admit I feel okay apart from getting tired if I overdo things which I think is more to do with the UC than lack of iron. Anemia is a terrible tiredness isn't it and I definitely don't have that since the transfusion.

LH

What job do you do ? how do you cope ?

Wed, 17 Mar 2010 05:52:22 +0100

Author: stevie t
Forum: Coping with Colitis

hi everyone im 31 yrs old and i am a hgv class 1 driver,i feel quite lucky after reading how many people have really bad flare ups,i do get them(actually got 1 starting now) but not too often which is good...i think.im just starting to worry a little bit that when i get flare ups that are bad and maybe more regular that i will have to stop driving,i wouldnt know what else to do,i dont think my employer understands what my condition is all about,in fact i dont really think i fully understand it myself,i dont normally talk to anyone about it as i feel a little embarrased,my wife is very understanding tho and always knows when something is bothering me,im on 2 asacol 3 times a day and prednisalone as and when i need it,i cant drink any alcohol(lager mainly) as it normally makes me flare up and makes me feel like ive had about 10 pints when ive had 1(dont mean drunk im mean like a massive hangover the next day) anyone else get this,still finding out about some foods cant eat anything spicy tho...one more thing i was told that this is supposed to be hereditry(think thats how you spell it) im a little worried my children might end up with it,sorry to have waffled on abit and totally gone off the subject but just dont really talk about it and i want to know so much !

Re: How old is everyone?

Wed, 17 Mar 2010 05:13:21 +0100

Author: stevie t
Forum: Coping with Colitis

hi everyone..my 1st post on here,im 31 now but had uc since i was about 25 and i was in the army,kept going to doctor and he kept telling me i probably have piles...um..a year or so later i got out of army and went to see my doc and he sent me to see my consultant who did tests etc and confirmed i had uc,oh and yes i always seem to be the youngest(told i look alot younger than 31) by far in waiting rooms.

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

Tue, 16 Mar 2010 22:25:06 +0100

Author: nickyd101
Forum: Lifestyle, Diet, Nutrition and Food Supplements

Just experimented with that Sunsweet Prune Juice to see what would happen.............whhoooooooooooaaaaaaaaahhh there!

good job i hadn't planned on going out

Not recommended!

Re: Iron Tablets.

Tue, 16 Mar 2010 22:15:37 +0100

Author: suenew61
Forum: Medications

Iron tablets can irritate the gut - which is the last thing you need if you have UC.
My daughter has done very well on Fersamal syrup. It is a liquid iron supplement that she took as very small doses measured with an oral syringe. She took 5ml twice a day with meals and managed to build her haemoglobin levels from 8 up to normal. You also have to take B-vitamins especially B12 because that gets used up too when making red blood cells.

Re: Weight loss

Tue, 16 Mar 2010 22:09:09 +0100

Author: CurlyEyes
Forum: Coping with Colitis

I know what you mean about feeling bloated.

I gotta say, thank god for this Jegging fashion craze. I quite like the denim ones. An elasticated waist and still fashionable! And if you're ever caught short, real easy to whip off!

Re: Weight loss

Tue, 16 Mar 2010 22:06:06 +0100

Author: debhasuc
Forum: Coping with Colitis

Hi,

I have started on the up day down day diet, i have been keen to lose weight since coming off the steroids am at least two dress sizes bigger than i'd like to be! But felt very frustrated as i can't eat the kind of foods that most healthy/ weight loss diets go for; wholemeal breads, salad,veg, fruit etc...

A friend of mine was telling me her husband lost quite a lot on this diet and the thing i found interesting was that i didn't have to change the type of foods i was eating just had to seriously restrict the calories every other day. I must stress i am not in flare up at the mo as i wouldn't try this if i was. I have been doing this for 3 weeks now and have started to notice a difference can't yet fit into the clothes i'd like but i'm definitely heading in the right direction!

The basis of the diet is that on a down day you restrict to 500 calories (not much i know!) and on an up day you are free to eat what you like (but not to purposely over eat!) It is suggested that you use protein shakes etc in the first two weeks but i just opted for eating a little breakfast and a calorie counted meal in the evening with lots of water during the day! I found it tough and was very grumpy on the down days during the first couple of weeks but seem to be a bit more used to it now.

I have found that my BM's have improved and i wonder if giving my colon a rest every other day by not putting in quite so much food is helping? Anyway i'm sure there will be many points of view as to whether this is a good/bad idea, but for me i needed to try something and this doesn't seem to have caused me any ill efects so far...

Debbie

Re: Daughter,15 operation on Friday, advice wanted please.

Tue, 16 Mar 2010 21:57:55 +0100

Author: kevandali
Forum: Surgery

Thank you so much for the reply, I can't wait, for my daughters sake when these sort of days are behind her (no pun intended.)
I have also has some lovely replies via facebook, thanks everyone for the help. Much appreciated x

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

Tue, 16 Mar 2010 21:51:41 +0100

Author: debhasuc
Forum: Other

Hey Joe,

how you geting on?

I remember feeling exhausted, i was off work for a while and found i spent a lot of time watching tv or sometimes not even feeling up to that! I really felt very low at times, not at all like myself, i became quite insular and remember being concerned that i was on my way to being clinically depressed, i was extremely lucky and had a lot of support from family,friends and a really good GP who continued to see me regularly even tho i was also seeing my consultant. The steroids do a fantastic job but they are potent and therefore must have side effects! (Can't say i'm looking forward to the next time i have to take them!) I hope you are doing ok, things will get better, it just takes time - usually longer than we'd like!

Be kind to yourself,
Debbie x

Re: Iron Tablets.

Tue, 16 Mar 2010 21:46:24 +0100

Author: CurlyEyes
Forum: Medications

Hi.

I just posted about this on another board but will post it here in case you miss it.

I take SPATONE which is water from the Welsh hills jam packed full of iron. You can drink it neat or add it to fruit juice (iron needs Vitamin C to be absorbed). It is easier to absorb than iron tablets and you can buy a box of sachets from Tesco or Boots or Holland and Barrett.

I had a blood transfusion (3 units) as I was down to 7 and when they tested me again a week later I was still only 10.4 so the consultant told me to take iron for at least 3 months. I'm going to take it always from now on though as I do have a tendency towards anemia and I do not want another transfusion.

LH

Hey, almost identical stories. My blood got to 5.9 and I had four units of blood. A week later I was at 10.2.

Is Spatone making any difference for you? Is it expensive?

I wonder why my consultant told me to stop taking Iron.