Ulcerative Colitis Forum

Re: date for op

Mon, 06 Feb 2012 00:10:24 +0100

Author: layton1974
Forum: Surgery

good luck with the op paul, hope everything goes well

layton

Re: FERRITIN LEVELS/ IRON TABS

Mon, 06 Feb 2012 00:00:04 +0100

Author: Annettemarie
Forum: Medications

My iron is 6 (should be 24) and my haemoglobin is 108 (should be 120) and I've been bleeding for 16 months, I can't take iron pills or liquid. However my GP didn't know what to suggest apart from eating more liver (which my wonderful hubby prepares for me as I'm a total wimp) or greens.

No wonder they haven't mentioned iron infusions if they cost that much. I'm going to ring my IBD nurse in the morning....

Fingers crossed.

Re: New and confused

Sun, 05 Feb 2012 23:59:33 +0100

Author: martmustgo
Forum: Other

Is it possible to feel fatigued whilst in remission as it has behaved itself since Christmas apart from a couple of occasions, it could be the beta blocer that causes this though.
I did have a nasty mouth ulcer on the side of my tongue 6 months before all the rushing to the loo and had it sugically removed.
I am not taking any meds for it as the consultant says that he doen't want to label it without the biopsy to back it up, the plan is to get in touch with his secretary if I get a flare up.
As far as work goes I haven't put in a full shift yet but that is determined by the atrial fibrillation, or maybe its not that.

Re: NEWBIE LOOKING FOR ADVICE

Sun, 05 Feb 2012 23:45:23 +0100

Author: Annettemarie
Forum: Coping with Colitis

Hi there sorry to hear you're suffering so much.

I'm on pred too, and I've suffered for depression for many years. I'm not taking medication for it at the moment, but I know what to look for and if my depression started to get worse I'd know and be straight to the doctor again.

The back ache is something I get, I can't remember why it is but its linked to the UC. My joints ache full stop, its due to the inflammation in the body.

Hope things improve for you

Re: Surgery or Drugs

Sun, 05 Feb 2012 23:02:43 +0100

Author: Karencraig
Forum: Surgery

Try the drugs and see what happens.

I was diagnosed Jan 2010. Started on steroids and asacol, tried azathioprine but allergic to it. During a hospital admission in Jan 2011 was started on infleximab. I was told by one of the other consultants there that it is one of the best treatments.

The process of infleximab is a doddle, sit around for a few hours having an infusion, then blood pressure taken every half hour for 2 hours. No side effects, but unfortunately it didnt work for me. Consultant also tried ciclosporine. I did feel better on that, and more controlled, but when I'm not on steroids I flare.

I am now waiting for my surgery. BUT I'm really glad my consultant tried the drugs (he's been telling me all along I'd need surgery) as at least I know I tried the other options, and they do work for a lot of people. I've also had time to get advice. Met with the specialist stoma nurse and surgeon before I made a decision. I've also met my local stoma nurse, and thanks to the forum got my head around my surgical options.

Re: NEWBIE LOOKING FOR ADVICE

Sun, 05 Feb 2012 22:59:30 +0100

Author: paulwelch
Forum: Coping with Colitis

Hi Beth,

I'm a 30 year old secondary teacher, recently diagnosed with ulcerative colitis. I'm afraid it isn't a nice illness at all, but a bit better to live with when it is under control.

I'm on Pentasa 4g per day at the moment and I've got my second course of steriods here 40mg going down 5mg per week... I must say that as far as I understand after reading the leaflet - you should not be on prednisolone if you are depressed. They are really a bad combination, and could really cause issues for your mental health. This might be something to discuss with your GP if your Consultant was not aware of your depression. There are other steriods such as Clipper which apparently have less side effects, but they are expensive - my consultant pretended he'd never even heard of them.

I've been off work all of last term (Sep-Dec) and just started back in January... I'm really tired, lathargic and have aches and pains. I don't have any blood now, just pain and my bms are back to normal. My honest advice is if you are still bleeding and suffering an acute flare up, get a sick note, rest yourself up and then slowly step back into,work. This is considered a disability by law - refer yourself to occupational health, get their support.

When asked about why I was off, I simply say that it is inflammation and ulceration of the large intestine, it's usually enough that they don't ask more... It also sounds quite serious, which it is! You need to rest and I can feel that from your message, look after yourself.. Cramps, bleeding, pains, bloating are all symptoms, not to mention the number of toilet trips! If asacol is as good as my pentasa then it took about 4-6 weeks to settle things, the steriods will get to work in the meantime, but I've got to admit I'm still not 100%.... thinking of you and sending you positive thoughts!

Paul

Re: Predisolone

Sun, 05 Feb 2012 22:56:23 +0100

Author: MichelleJW
Forum: Medications

Hey guys, I hope you all start to feel better soon! Side effects are horrible. I too was admitted to hospital 2 weeks ago. This was the first time I have been given IV steroids. They had me on 400mg a day for 6 days. I piled on the weight and my face looked like the moon! Since reducing down to oral pred of 40mg a day this has reduced really quite quickly. steroids always make me eat like a horse, have a thumping heart, and I turn very moody and emotional!

Can I ask if anyone had any side effects regarding a drop in heart rate? My heart rate when I was admitted was 129 but after 4 or so days on IV it slowed down to 38! They've been checking me with ECGs and tomorrow I'm having a 24 hour monitor fitted. After weening onto oral pred it's got higher. I also has a blood transfusion and about 6 drips of potassium etc so I'm hoping it was just my body readjusting to all the new ingredients!

If anyone has shared this problem, id be so grateful to hear from you!

Re: date for op

Sun, 05 Feb 2012 22:51:10 +0100

Author: Karencraig
Forum: Surgery

Best of luck for 8th. Paul. After reading the other postings, I'm sure you'll be great afterwards. My surgeon only does 3 stage as it reduces risk of infection etc to 1%.

this time next week....

Re: What's next after Mezavant XL?

Sun, 05 Feb 2012 22:49:00 +0100

Author: Johno_26
Forum: Medications

I've been back on the Mezavant for nearly two months and have seen great improvement with my colitis for the first time in a year after being on everything else - done it all really! I came off steroids six months ago and stopped 6MP a month ago because of my red blood cell count. I now only take two Mez XL per day which has led to more consistent solid stools, less urgency, no accidents and more safe wind! I've had a great start to the year in that sense but I still can sometimes 'feel the inflamation'. I just hope Mezavant continues to be the solution for me. I've got an appointment with my specialist this week and I'll be happy to share my progress. I can't see him changing things now that things are settling after a three year flare!

Re: scd yogurt

Sun, 05 Feb 2012 22:33:34 +0100

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

You can buy a yoghurt maker for around £20 in big supermarkets and places like Lakeland and John Lewis. They're really easy to use and you don't have to worry about making the yoghurt wrong.

Otherwise, if you read the really, really long thread about the SCD diet, I think there is some advice about making SCD yoghurt without a yoghurt maker. A method is also described in Elaine Gotshal's book - Breaking The Vicious Cycle, where she describes using a slightly open oven. You basically need to ensure that the temperature at which the yoghurt ferments is at a constant, specific temperature (I can't remember the temperature though) and you need to leave it for at least 24 hours.

Re: What's next after Mezavant XL?

Sun, 05 Feb 2012 22:20:46 +0100

Author: Nettynetty
Forum: Medications

No netty, you've not read my statement properly... I meant that when I have bad flare ups it makes no difference when I take the pills anyway so there will be a day where (until I get a new treatment plan) I have missed a day... calling me short sighted too isn't very nice and I dont see what you are trying to achieve by kicking me when im down so thanks for that.

Sorry to hear you've taken offense at what I consider to be sensible advice. If you re-read your original post, you'll see that you said that you sometimes "deliberately forget them" so what else should a reader assume that you mean unless you explain things properly. Hope you feel better soon and that you take on board some of the advice that has been offered to you on this forum. I was actually trying to help you with some advice you know. So long.

NEWBIE LOOKING FOR ADVICE

Sun, 05 Feb 2012 22:17:27 +0100

Author: missbeth
Forum: Coping with Colitis

Hi, I was diagnosed with UC just before Christmas after a colonoscopy, and didn't really understand how serious an illness it is. I am now begining to realise as I'm so poorly, and I'm struggling to cope. I think I've been in denial since I found out, and now its all hitting me!
I'm on oral steroids, 8 in the morning, plus asocol 3 times a day and colifoam at night. (I'm also on anti depressants for an ongoing depressive illness). I have no idea if these doses are high or low, and how bad my condition is, compared to others.

I'm constantly tired, and have very achy legs. I have also had really severe back ache that came on three days ago, with no apparent trigger, would this be related to the UC? I am also very weak and collapsed twice today. I have what seems to me, to be a huge amount of bleeding, but again, I have no idea what is the normal amount for a UC patient. I also have constant cramps, that feel like period pains. My stomach is very swollen too.

I saw my consultant a couple of days ago, who, if I'm honest didn't really have much time for me. He put me on the 8 x steroids per morning, as until then I'd just been having the enema and asacol. About an hour after taking them, I become quite woozy. Is this normal?

I'd also like to know how long these flare ups can last? I've been bleeding now since last November and it has got increasingly worse, so hoping the new steroids take effect soon.

What about work? I've no idea if I should be at work or not! I feel very tired most of the time, and have to go to the loo anything from 5 to 10 times a day. I'm a teacher in a special behavioural school and have to do a lot of one to one work. I've had a lot of days off, and been in late due to little accidents. I love my job, and don't want to stop working. I'm only 33 years old!

Sorry for banging on to a load of people I don't know, but I don't know anyone else with the condition, and I don't really know how to explain it to my colleagues and parents. I also have a five year old daughter, and a very understanding an d supportive partner. Its very hard to explain things to my little girl, as I want her to understand why I'm always too tired to take her swimming etc.

I'm very down about the whole thing really, and just need to hear other peoples stories, how you all deal with things and words of advice.
THanks for listening,
Beth

Re: Quick ques re newbie taking
Sun, 05 Feb 2012 22:07:07 +0100
Author: Monkey81
Forum: Medications

Thank you for the food/meds tip if writing things down, sounds like a very gd idea. It's so tricky all this ulcerative colitis stuff, so much out there to read but I have found its so individual to each person. Some foods irritate some people, others don't and the same with meds. It is going to be a long road I know that. Hubby is only 27 bless him.
He works permanent night shifts which I don't think help at all, trying to find something else is not easy. It's scary to think he might be on meds the rest of his life. Definitely don't want that to be steroids, hear so many nasty things about them!!

Re: Quick ques re newbie taking
Sun, 05 Feb 2012 21:57:16 +0100
Author: curly_clare
Forum: Medications

No probs - I found this site not longer after getting diagnosed and so glad I did, it is brilliant.

Glad to hear the pred might be starting to work – they can take a while to kick in for some people so fingers crossed things are on the up for him.

Food's a funny one – everyone is different in what they can and can't eat, but plain food, low fibre, no dairy, etc is definitely a good idea to begin with – then you can start introducing different foods and see what effect they have. I kept a food/symptoms/meds diary for ages – it doesn't take up that much time once you get into the habit. I never ended up identifying any foods that caused me problems, but it was really helpful to look back and see the longer term trend of my symptoms to see if particular meds were working or not – it's quite hard to tell day by day whether you're improving or not, but over weeks or months you can see how things are going. (Never in a million years did I think I would be writing down how many times I went to the loo in a day – just one of the many joys of colitis )

Re: Quick ques re newbie taking
Sun, 05 Feb 2012 21:41:10 +0100
Author: Monkey81
Forum: Medications

Hi Clare,
Thank you for the reply, I will get him to ask in the pharmacy tomorrow when he takes his repeat prescription for his Pentasa in.
This is day 5 of taking a 40mg dose, I thinkt the frequency of bowel movements has decreased, and they seem ever so slightly more solid but only 5% of each toilet visit. Consultant was a bit bad on the info front when he prescribed them. Didn't give much help about side effects or what's to do re food, so we have stuck to what he has has been eating, very plain simple food, no dairy, high fibre etc. just until it all calms down.
Thank you for your help. I will definitely be using this forum to read up on advice and tips!

Re: Quick ques re newbie taking
Sun, 05 Feb 2012 21:31:00 +0100
Author: curly_clare
Forum: Medications

Hi monkey81

I've not suffered from that particular side effect from pred myself, but I'm sure I've read of other people having the same reaction.

As far as I know you can take indigestion tablets when you're on steroids – although they definitely shouldn't be taken at the same time of day as any modified-release meds, which the pentasa or the pred might well be. If in doubt – just nip to the chemist and ask the pharmacist – they're generally very helpful and know exactly what drugs you can and can't take together.

Somewhere in the back of my brain is the idea that you can get prescribed omeprazole (http://www.patient.co.uk/medicine/Omeprazole.htm) to combat stomach problems like this – maybe something to ask his GP if the rennies don't do the trick?

Let us know how you get on

Clare

Re: Any help with funding for Inflximab?

Sun, 05 Feb 2012 21:21:26 +0100

Author: curly_clare
Forum: Medications

Sorry I have no words of wisdom for you, funding for infliximab seems to be such a postcode lottery with patients being able to exert little or no influence – but just wanted to show my support for what is such a frustrating situation for you. It just seems totally wrong that we have a NATIONAL health service, and yet it comes down to whereabouts you live in the country as to whether you can get the correct treatment or not...

Re: Surgery or Drugs

Sun, 05 Feb 2012 21:14:10 +0100

Author: curly_clare
Forum: Surgery

ps: just one more thing - I'm sure your consultant has your best interests at heart – but whether to have surgery or not is a big decision and not one you should necessarily have to make within a week. If you don't feel ready to decide so soon, tell him that - let yourself have as much time as you need to think things over.

Re: Surgery or Drugs

Sun, 05 Feb 2012 21:09:09 +0100

Author: curly_clare
Forum: Surgery

Hi roadrunner

I'd gone through the asacol/prednisolone/azathioprine options and still never reached this mythical state of remission. Ended up on infliximab last july, for me it was a wonder drug - started working within 24 hours and within a couple of months I was totally in remission and feeling the best I had since being diagnosed.

It doesn't have a massively high success rate, I think I’ve read 30-40%, and like any meds there are potential side effects. I'd got to the stage of infliximab or surgery... my consultant was very pro giving inflix a try (he has lots of crohns and colitis patients on it), and my feeling was that I'd like to have explored all the options before going for surgery.

If you've got any more questions about infliximab just shout and I'll do my best to answer them. I’m sure there'll be some other folk along soon to tell you more stories from the surgery side – there's lots of people on here that have had really positive experiences going down that route, and I know reading their posts have helped me a lot to start getting my head round it, if/ when it arises.

Keep us posted with how things go

Clare

Re: Flare ups=accidents!?

Sun, 05 Feb 2012 20:59:14 +0100

Author: Annettemarie
Forum: Coping with Colitis

I'm in flare up now and the last two flares I've had (six years ago and now) I've experienced accidents. This flare is worse I have to say.

The urgency is upon you and then clear the decks I'm coming through. Unfortunately my bathroom is downstairs and I've had many a desperate dash down the stairs in the middle of the night. I'm keeping my fingers crossed I one, don't fall and break my neck, two, don't trip over the cat and break my neck, three that I can make it through the hall, the dining room and kitchen before I reach the bathroom without tripping over the cat or the dogs, and four...that I make it in time!

Thank God for Tena lady, well I used Tesco's own brand, but I find I feel a little more secure with them on. It gives me some breathing space and always make sure that a spare pair of pants in my bag and maybe some wipes. Best be prepared....

Net

Re: I would like some thoughts on my awful situation PLEASE!

Sun, 05 Feb 2012 20:52:54 +0100

Author: Annettemarie
Forum: Coping with Colitis

Hi there

I was diagnosed in 2001 but I've had bowl problems since I was at primary school. I'm not 43.

I'm no expert but from what you've said, its colitis. Please do worry about the sigmoidoscopy, just think that once its done you're have peace of mind.

I have to admit I was worried that with this flare up I had something more serious, I posted my concern on here and was so relieved to hear that other sufferers also went through similar things. I can't tell you the weight it took off my shoulders. I was so scared I was the only one and that no one would understand where I was coming from. I shouldn't have worried. People here are full of information, friendship, compassion and we help each other through the bad times and good. And if all else fails we have a giggle about the moments.

I too have not made the bathroom and the first few times I would be reduced to a crying wreck and felt like I could never leave the house again. But I just keep thinking that this flare up will pass.

Hope you get the answers you're looking for.

Net x

Re: First sigmoidoscopy

Sun, 05 Feb 2012 20:44:11 +0100

Author: janejane
Forum: Coping with Colitis

Hi Sam,glad you got on ok.jane x

Re: LEFT SIDED COLITIS

Sun, 05 Feb 2012 20:41:42 +0100

Author: Annettemarie
Forum: Surgery

Thanks Em, it so helps talking to you about it. God knows where I'd be without this site.

Sounds like you needed a good rest, you've been through so much in the past week. I know what you mean with pred, one minute all is well the next you think you've made no progress at all! Don't feel bad though, fingers crossed you're be back to feeling positive this week. Only a few more sleeps till Friday.

Yep GP's are a total nightmare where UC is concerned. I do have one doctor at the surgery who is a star, he was the one who got me admitted to hospital when I was in a bad way, but he is semi retired so its hard to get an appointment with him.

I am going to ring the IBD nurse tomorrow, the Pred has slowed my visits but the blood and discomfort are just as bad. I had to get up in the night, twice, but then stayed in bed till noon! I've managed to cook dinner and do some washing. Oh and my hubby helped me clean out out chickens. I've six hens and a big old cockerel. I love being outside with them they're such characters. I've nine lovely brown eggs they've surpassed themselves today. I want to get two pigmy goats too but they're expensive so not sure we can do that this year.

I think you're right, our bodies tell us when we need to rest, its only us nutcases who try to keep going then. Sounds like you're me not used to not working and being busy. I hate the thought that someone might think I'm lazy.

Thanks for being there...I'll let you know how I get on.

Take care
Net x

Re: What's next after Mezavant XL?

Sun, 05 Feb 2012 20:17:52 +0100

Author: Jorumbles
Forum: Medications

I think Mezavent has more of a cumulative effect- so to see if its not working you need to stop it for longer than a day or two. Same to see if it IS working, it takes a week or 2 to kick in.

I take Mezavent XL everyday and do well on it. I forgot to take it for the first time one day last week and I wasn't suddenly ill for one day- I was fine. On the other hand, I suspect if I don't take it for a month I will be less than fine.

If you feel you need something else though you should go back to your consultant

Re: I would like some thoughts on my awful situation PLEASE!

Sun, 05 Feb 2012 18:33:56 +0100

Author: curly_clare
Forum: Coping with Colitis

Hi Veronika

Welcome to the forum. Your symptoms definitely sound like they could be UC - you've done the right thing scheduling a sigmoidoscopy so you can finally find out. If you have any questions about the procedure just shout and one of us will hopefully be able to answer them.

And once you get a diagnosis, if it is UC you can get started on medication, and things will get better. It might take a while to find the right meds for you - it did for me, but at least you're on the right track...

Clare

Re: Surgery or Drugs

Sun, 05 Feb 2012 18:05:07 +0100

Author: layton1974
Forum: Surgery

Hi roadrunner, welcome to the forum

i think you'll get a few different answers to your question, some will say try the medication, i think you'll find that Infleximab is the last option before surgery, the decision you've got to make is are you happy to be on meds for the rest of your life, if you dont mind the meds then try the meds that your doctor suggested, but if you dont want to be on them then go for the operation, i had emergency surgery last June which took the very hard decision out of my hands, but knowing how i feel now, and i was asked again did i want the op, i'd have it in a heart beat, i'm keeping the iliostomy for good and not having a pouch, which is my decision, plus, i'm no longer on any meds and i can eat and drink prety much what i want and not have to worry about running to the loo

good luck with your decision and keep us posted

Layton

Re: Stump removal

Sun, 05 Feb 2012 18:03:25 +0100

Author: wayne1983
Forum: Surgery

Thanks echo, i remember reading your story a while ago. I will say apart from when it was first done, i dont ever go to the toilet to pass mucus/ blood or anything., i take it this is a good thing?
Basically once you had it done is that it for the surgery?. When i was in for the emergency one, i wanted it done asap has i was so ill, however been back to normal its a lot more scary imo. But it looks like it needs doing eventually, and really id rather get it done and dusted. All the best.

Re: Stump removal

Sun, 05 Feb 2012 17:56:36 +0100

Author: echo9970
Forum: Surgery

I had mine taken out on the 12th sept 2011 just over one year after my stoma op as i was staying with the bag and my stump was playing up big time so out it came. They said i should be inn for 3 days but my heart rate was over 100 and up to 140bpm i was drinking to much and to much urine but i had that b4 i went inn, so i was inn for 2 weeks, they opened me up down old scar and put the drain in the same place the op was meant to be 2 to 3 hours but last 6 hours has i had lots of scaring from my 1st op. Rectal wound did not hurt that much but the stitches dug in as they were hard ones. I healed up very fast and as i work on a farm and do lots of lifting i had 10 weeks off but i do think i could have gone back sooner. The only problem i had was with the fluid that was left behind put that has all cleaned up now

Re: Does colitis gets inherted to the kids

Sun, 05 Feb 2012 17:39:27 +0100

Author: Karencraig
Forum: Coping with Colitis

consultant told me it was genetic, but don't think its definite children will get it.

My mum and 2 aunts have it to varying degrees. Shes one of 7 and none of the others have it. I'm one of 22 cousins and I'm the only one with it. Brother is sickeningly healthy, think he got dad's genes!!!

luck of the draw I think, there might be a greater risk if its in the family, rather than definite.

Re: Flare ups=accidents!?

Sun, 05 Feb 2012 17:31:12 +0100

Author: Karencraig
Forum: Coping with Colitis

when out and about, you can apply for a key for disabled toilets. Some local councils provide them I believe, but you can buy them from http://www.radar.org.uk/
I've found mine invaluable, especially when ventured out Christmas shopping. Its not just not having to queue, but the use of a sink in the same room. There is also a book which lists all the toilets in the country, including those in pubs and shops. It is quite pricy, but again I did find it useful. If you've got an iphone theres an app you can download

Mind you, do feel like I've got to walk with a limp on the way out!!!!