Ulcerative Colitis Forum

Re: Your treatment depends on the cost of medication it seems!

Fri, 18 May 2012 08:37:51 +0200

Author: scotiamac
Forum: Medications

Hi I wondered about this cost thing too, I was on AZA few years back but only for 2 weeks as bloods were bad and had to come off. after my last flare my consultant said my tpt levels were ok and if I flared again then he would put me on aza ! I reminded him that I couldn't tolerate it last time but he said you might be ok the next time..! in between then I spoke to my gastro nurse who said there would most certainly be no point on going back on aza and he would get 6mp instead, so is aza cheaper than 6mp? why do they think its ok to mess about with you just to save a few quid its sooooo unfair.

KEEPING FIT

Fri, 18 May 2012 02:07:09 +0200

Author: chris_25
Forum: Lifestyle, Diet, Nutrition and Food Supplements

Hey guys,

Just curious if anybody takes regular exercise, whether its on cardio machines at the gym, road running, weight training, swimming, team sports etc.

Also do you find that your diet supports your training needs aswell as helping you control you colitis?

Truth be told I'm struggling myself. I studied for 2 years and have been a fitness proffessional for 3 years, but since I was diagnosed everything I thought I knew has gone out of the window and I feel like I'm stood in the middle of the ocean and thats all I can see.

Does anybody use supplementation with training? If so what supplements or do you find that certain things cause unhappy times?

Re: Thinking of Aza please read this...

Fri, 18 May 2012 01:19:42 +0200

Author: chris_25
Forum: Coping with Colitis

I don't understand this use for this med. Some people so far have said that they have needed prednisolone along with it, somone else said they use it in conjunction with mezavant.

I'm currently on 2.4mg of mezavant, and during flair ups, tappered doses of Prednisoslone put things back in line. The consultant at the clinic sent me for bloods to test before using azathioprine, but is it a replacement for Mezavant, does it irradicate my requirement for prednisolone during a flair up, or is it standard to trial it with Mezavant, if that fails, trial it with prednisolone?

I'm aware of the side effects of Pred, and I want to avoid them, but oesteoperosis, excess hair, increased sweating and weightgain Vs pancreatitis, hepatitus, no energy...which would you rather? a kick in the nards or a smack in the teeth. neither

Re: Your treatment depends on the cost of medication it seems!

Fri, 18 May 2012 00:26:26 +0200

Author: siobhan-83
Forum: Medications

Hey, no not had any kidney pains. They stopped the bleeding for me in a couple of days (and it was severe) been on them a few months now and can eat more things and feel better in myself and not exhausted all the time. Im not 100% but id 75% better than I was. Im on salafalk enemas similar to pentasa.

Re: need some advice

Fri, 18 May 2012 00:14:12 +0200

Author: smily_face
Forum: Coping with Colitis

yes definitely I agree! I have discovered that I am actually a lot stronger and determined than I thought, coping with uni (and the many outdoors field trips with the shared toilets n rooms a bit of a nightmare!) and work and managing to work all the available overtime at my lowest point (although it was a bit stupid I admit), it has also made me realise/reminded me that I want to work with people and to help them. I have never forgotten my dreams/goals, just lost sight of them at times along with the determination. I do have my down days as I'm sure everyone does, but I certainly have a lot more fight in me other days and put total determination into getting where I want to be (which ironically is because of this disease!). So in a way this disease is a bit of a curse, but at other times gives me the kick up the bum I need to sort myself out lol.

Re: Your treatment depends on the cost of medication it seems!

Thu, 17 May 2012 23:46:31 +0200

Author: chris_25
Forum: Medications

Do you fiond the enemas cause kidney pains? My GP prescibed Pentasa for a week in a telephone consultation at the start of a flair up. I found that they stopped the bleeding, but my stool was still loose, and the day after I started them my kindeys felt like lumps of granite.

Re: need some advice

Thu, 17 May 2012 23:28:03 +0200

Author: chris_25
Forum: Coping with Colitis

You can lead as normal a life as you want. If Steve redgrave can win a couple of gold medals, Lewis moody can captain his country and Darren fletcher play for arguably one of the best football clubs and represent his country, then we can at least attempt to live a reasonably normal life right?

This is all just occuring to me, so I'm not entirely sure what my point is, but I'm an extraordinary man, much like the olympic champion, and the English International and British Lions monster.

other people suffering from IBD such as JFK and Eisenhower ran some place called USA, song writter and recording artist Anastasia, for those of you who were/are wrestling fans theres the Animal.

Ulcerative Colitis is a pain in the arse but if these people can suffer with various IBD and change the world, at the very least we can live in it?

Before my diagnosis I was training to enter a bodybuilding competiton, and also got trials at my local American Football team. I weighed 13 and a half stone, my goal was 16 stone. I gave up and allowed the steroids to take their toll. I ate because my increased appetite was a side effect of the prednisolone. I stopped training because I was feeling a little fatigued. I allowed this disease to steal my focus, cloud my vision, distract me from my goals. Yesterday I weighed 17st 8lbs.

If you can build a routine to take control, then you can thrive in any situation.

GOOD LUCK!

Re: Another interesting fact ! Seasonal variations and flare ups

Thu, 17 May 2012 23:14:06 +0200

Author: matilda1142
Forum: Coping with Colitis

There are lots of variable. Not all my flares have been in autumn/winter,but now that my colitis has deteriorated I only have to get a cold for a flare to be triggered, so winter-time is obviously going to be a bigger problem.

Re: Low Residue/Low Fibre
Thu, 17 May 2012 22:25:10 +0200
Author: Karencraig
Forum: Lifestyle, Diet, Nutrition and Food Supplements

I'm just finishing the low residue <a href="http://www.ulcerativecolitis.org.uk/dietarychanges.htm" target="_blank">diet</a> but I'm struggling with how best to introduce foods. Is it just one every few days to monitor the effects?

Yes.

Your treatment depends on the cost of medication it seems!

Thu, 17 May 2012 21:47:14 +0200

Author: siobhan-83
Forum: Medications

After a trip to the GP yesterday with a different problem than my UC- dizziness and ringing in ears great! My GP made a remark about te cost of the enemas I am currently taking. He asked me if I was using them every day i said yes, he said they cost £30 a week, £120 a month! I asked him what his point was... I pay my national insurance and pay for my prescriptions. Then it dawned on me.. I have seen 3 consultants in the past year since being diagnosed and theyve always just prescribed pred and mesalazine and tried to talk me into Aza, then I saw my IBD nurse about 2 months ago who suggested enemas which are really helping me. When I told the GP it was the nurse that prescribed it he said 'it always is the nurses..' I was fuming. Atleast the nurses genuinely care and dont want to just try s on all the cheapest drugs first to save the NHS money. I was so angry, how dare he make comments like that! I dont feel guilty if I wasnt using these enemas I could be really poorly and be hospitalised, then Id be costing the NHS about £300 a day! not £30 a week!

Re: Anxious & Tearful, Awaiting Results

Thu, 17 May 2012 21:30:03 +0200

Author: peanut12
Forum: Coping with Colitis

hello
sorry to hear how upset you feeling it is scary times waiting to be diagnosed.
i was diagnosed in hospital in May 2010 after an almighty flare up i was due to get married in october 2010.
i remember the nurse asking me for a stool sample and repeating to me stool sample as i handed her my pan of blood explaining that was my stool sample and not a wee wee. I had iv steriods iv circlosproine and after three weeks in hospital ( was an almight flare up please note) i was released on steriods and now take 2 azathioprine and 4 pentasa.
i have a fantastic consultant doctor cann
I did get married in kenya in 2010
within three weeks of my release from hospital i was back at work ( i have a very supportive manager.)
i now work full time and yes life isnt a bed of roses but once your diagnosed and a treatment plan is put in place you will feel a huge weight lifted.
you need to be well for your children so if the doctor needs you to go to hosptial find out what for it might be to get some meds into your system quicker to get you feeling better look after number one !!!!
hope you get your diagnosis and treatment plan started soon xxx

Re: D Day Tomorrow

Thu, 17 May 2012 21:08:46 +0200

Author: Fillo1400
Forum: Surgery

Hopefully now it's all over James and you no longer have UC. Welcome to your new life. I know it will take you a while to realise it but you'll feel SOOOOOOOO much better after a short time. No way would I ever go back to having UC even if they paid me. Only thing I regret now James is why I didn't have it years ago! You'll be saying the same in a few months. I had mine done in Belfast in Nov last year and am back to work full time again. No more searching for the nearest loo when out and about just so that you know where it is when you're gonna need it.
Hope to hear from you soon. Take care and good luck on your road to recovery.
Big hugs.
B

Re: need some advice

Thu, 17 May 2012 20:41:31 +0200

Author: smily_face
Forum: Coping with Colitis

thanks yeh things are going ok with the pentasa and aza, I had been on various other mesalzine and steroid treatments in past so hopefully this combo will keep it undercontrol although I keep getting pains in my stomach and some bad days every so often but I'm thinking it's just early days and something that'll come and go. My ibd nurse has been very good despite the rocky start! At the moment it's definitely the mental side and getting my head round it that's the problem! I just I don't want to be on medication rest of my life, want to be free to travel and explore without having to be organised! (well I'm an organised person usually but want to be free and spontaneous). I just don't like being reminded that I have a disease :(

Re: Low Residue/Low Fibre
Thu, 17 May 2012 19:03:40 +0200
Author: Scargilld
Forum: Lifestyle, Diet, Nutrition and Food Supplements

Thanks whiskymac. How did you find going from veggie to a meat eater? I have been vegetarian 22 years and have occasionally started to eat salmon although I don't enjoy but really don't know how I'd manage eating meat as the idea makes me feel ill. Did you start with a particular meat?

I'm just finishing the low residue diet but I'm struggling with how best to introduce foods. Is it just one every few days to monitor the effects?

Re: New to all this

Thu, 17 May 2012 19:01:17 +0200

Author: mikeyrr31
Forum: Medications

Surely feeling nauseous at night is better than pain and diarrohea all day? Also these doctors have given her the medication for a reason. If your that stumped I would suggest going private as you'll get the full undivided attention of a expert, rather than delays and being fobbed off which occurs in the NHS.

Re: One month after stopping the
Thu, 17 May 2012 18:22:58 +0200
Author: Steph1989
Forum: Coping with Colitis

Might be worth trying a low residue diet for now then gradually re-introduce foods when things settle down a bit?

Not sure if a wheezy chest would be related to the steroids but you should mention it anyway when you speak to the nurse tomorrow. Could be because your immune system is low from the pred and it hasn't fully cleared? Keep us updated with how you get on with the nurse tomorrow. Hope you are feeling better soon, I myself just got over the flu and with colitis it does literally feel like you're falling apart! I always say - I swear I have the body of a 90 year old woman & I'm only 23!

Re: Have to make a decision!

Thu, 17 May 2012 17:21:48 +0200

Author: Karencraig
Forum: Surgery

Phil, after UC, the aftermath of surgery is much easier. Honestly the worst problems I've had are, trying to get the old muscles working again, inactive for months and really stiff! And trying to decide on the type of bag to go with. 11 weeks on, down to 2 types of 2 piece!!!

Re: One month after stopping the
Thu, 17 May 2012 16:48:04 +0200
Author: Graham C
Forum: Coping with Colitis

I will ring my Nurse tomorrow and discuss it with her. To be honest as i was feeling ok with no problems i was eating as normal. i guess i will have to watch what i eat from now on

Thanks for the advice. This is all still quite new to me and it is a steep learning curve.

Probably not connected, but since coming off the steroids i have quite a bad wheezy chest, which did not clear with antibiotics. Not sure if it is a side effect or something else?

I seem to be falling apart

Re: Possible UC

Thu, 17 May 2012 16:28:09 +0200

Author: MrsGraham
Forum: Coping with Colitis

Hi it turntable into stomach flu it was awful 4th time I've had it since Dec the cramps were horrendous constantly feeling like I needed to go but didn't I'm a lot better now. I got my apt today with the colon something or other? I thought it would be with a gastroenterologist?

Lynda

Re: One month after stopping the
Thu, 17 May 2012 16:26:40 +0200
Author: Steph1989
Forum: Coping with Colitis

Hey, sorry to hear that you're flaring again. How is your diet at the mo, you said you get bloating after eating, have you made any adjustments since being diagnosed? I find that at the mo I am basically in remission, but when I eat something that doesn't agree it's almost like I'm flaring again, it gives me bad bloating/gas usually followed by quite a few trips to the loo!

If the asacol doesn't seem to be working there are various other options. I have gone down the immunosuppresant route, tried azathioprine which didn't work for me, now on 6-Mercaptopurine. But there are all sorts of other things too, I've posted a link below to the medicines section on NACC website which is pretty informative.

http://www.nacc.org.uk/downloads/factsh ... icines.pdf

Have you contacted the hospital for some advice? Hope you feel better soon :)

Re: One month after stopping the
Thu, 17 May 2012 16:06:14 +0200
Author: Graham C
Forum: Coping with Colitis

At first they thought it was Crohns, but revised the diagnosis to probably being ulcerative colitis.

Re: One month after stopping the
Thu, 17 May 2012 16:04:00 +0200
Author: dougalmcp
Forum: Coping with Colitis

Hi Graham

Bad days man, sorry. Have you had a colonoscopy and do they know exactly what type of UC you have? It can have a bearing on what types of medications work for you. It's likely your consultant will want to try alternative types of mesalazine before going to the next step which might be a further dose of steroids or perhaps some form or immunosuppressant.

One month after stopping the steroids it is back

Thu, 17 May 2012 15:51:27 +0200

Author: Graham C
Forum: Coping with Colitis

Had a 12 week course of Pred. Until recently I was coping quite well. Stomach bloating started (after food) about 2 weeks ago but everything else quite normal. However, in the last week it has returned with all the usual symptoms. Still taking the Ascol (6 tabs a day), but they do not seem to be doing any good. What is plan B (if there is a plan B)

Graham

Re: Diagnosed today and confused...

Thu, 17 May 2012 15:49:58 +0200

Author: dougalmcp
Forum: Coping with Colitis

Wow, that’s terrible. The NHS can be a bit pernickety and tribal when it comes to procedure but really there’s no excuse for all this. I mean, most senior staff in a hospital can issue a one off prescription with a scribble on a piece of paper and correspondence between your consultants department and you GP has nothing to do with you, it should happen automatically.

Ultimately your GP is responsible, if I were you I’d ask to change hospital if at all possible. If your GP is useless get a new GP, again if possible.

You’ll need smooth procedures for the future as everything needs to happen quickly and efficiently when you notice a potential flare up occurring. Probably of no help but the ECC in Fazakerley comes with my recommendations.

Re: Have to make a decision!

Thu, 17 May 2012 14:54:09 +0200

Author: philayl63
Forum: Surgery

I had my surgery in 3 stages as when I had the colectomy I had been on <a href="http://www.ulcerativecolitis.org.uk/medications/steroids.htm" target="_blank">steroids</a> for months and they slow wound healing. At that time I had an end ileostomy and it was easy to manage. I never had a leak and emptied it when I felt like it. Also did not have any skin problems. After about 5 months I had the Jpouch and rectal stump removed. They did a temporary loop ileostomy at that time which I found quite challenging as the output was very liquidy and acidy. The stoma was flush with the level of my skin so it was hard to seal the bag properly and I had a few leaks but fortunately managed without the whole world knowing as I always carried plenty of supplies with me. I took a while to heal internally but did eventually and after nearly a year had the ileostomy reversed about a month ago.

I feel better already than I have in years. I am going to the loo quite a lot but there is no pain or urgency and it doesn't bother me. The main thing is that I am healthy, eating most foods and have energy. I have not had any accidents except a tiny amount when I coughed a couple of times but I am wearing pads so that is no problem. It's been quite a long journey for me but I am so glad I have come out the other side. If given the option again I would definitely choose the surgery.
Hi, I'm glad you are at last starting to make a full recovery, thanks for the info, I am thinking that after surgery I am going to have quite a large learning curve ahead of me, but I suppose after 14 years of UC and numerous "accidents", things can only improve. Phil

Re: Have to make a decision!

Thu, 17 May 2012 14:49:24 +0200

Author: philayl63
Forum: Surgery

Hi Phil.
any update, how you doing?

Karen
Hi Karen, still waiting for an appointment with a surgeon, things don't move very quickly round here I'm afraid, now been on the steroids (15Mg a day) for nearly a year, don't know about "moon face", more like balloon face! Phil

Re: Symptoms other than gut????

Thu, 17 May 2012 14:24:11 +0200

Author: Steph1989
Forum: Coping with Colitis

hey, interesting topic!

I have suffered with depression, currently taking fluoxetine for that, think that was caused from the stress of colitis along with high pred doses.... I had a stomach ulcer a couple of years back which was excruciating and went undiagnosed for quite some time as the doctors would always say the pain was my colitis, even though I knew it was far to high up to be that! I also developed M.E a couple of years ago which I am now recovered from but suffered quite badly with at the time - also went ages undiagnosed as the symptoms were again blamed on colitis. I had glandular fever in my late teens which is thought to be a cause of M.E.

Other than that it has been mild things which have been side effects of the tablets, mood swings, bad skin, dry mouth... I get mouth ulcers but they don't actually hurt me at all, which is strange coz mouth ulcers can be really painful! It is really irritating its like the GPs think we just make all this stuff up to add to the list of things wrong with us. WHY WOULD WE DO THAT? So frustrating.

Ragingwitch, my hair is also very dry, what meds are you currently taking?

Re: Anxious & Tearful, Awaiting Results

Thu, 17 May 2012 14:23:39 +0200

Author: chris_25
Forum: Coping with Colitis

Hey,

Sorry to hear you're not having a fun time atm! To be honest I don't know what your doctor wanting to admit you to hospital means, personally I avoided the issue until hospital was a neccesity, which was not a smart thing.

I understand why you might be feeling upset, I want to tell you not to worry because if you don't have UC then all the concern was for nothing, and if you do have UC, then you cant change that and medication is available to help you.

I found that I couldn't stop feeling sad, confused and angry, and after 6 months I finally feel like I've come to terms with the fact I need to be proactive here.

Hopefully you'll find sollice in the fact that you are not on your own, and there are people who have been through the diagnosis, the flair ups, the medication changes, the surgeries and if you do need to discuss anything or need some support then there are people here who understand.

Re: Help please work advice needed

Thu, 17 May 2012 13:50:48 +0200

Author: bumsrus!
Forum: Employment and Workplace Issues

I work for the nhs too. Unfortunately i think they are more unsympathetic even though we expect them to be understanding. I rarely take any time off, struggle on. Largely because i am office based and can rush to loo when i need too. I've sat crying in pain and still gone in. I am at home now having taken 2 days off and informed work that i'm not feeling any better so wont be in tomorrow. Just had a call from my manager to say they are going to have to book a locum if i dont go in and 'thats very expensive'. Really p'd me off, my manager is totally clueless and seems to think that i occasionally have an upset stomach. Silly cow...sorry, moan over.

Re: Diagnosed today and confused...

Thu, 17 May 2012 13:50:36 +0200

Author: chris_25
Forum: Coping with Colitis

That is rediculous! I've noticed that GP receptionists have a holier than thou attitude, I think I lucked out with my GP though. Originally I was diagnosed with IBS and given meds to treat that, but when I had a flair up recently I was prescribed 2 weeks of Pred and referred to the gastro at my local hospital, and given a review appointment with my GP 2 weeks later, and given another 6 weeks of pred and now I'm done with that course, I need to make another appointment to see my GP again because he wants to follow up.

I really hope that your healthcare improves, because what I have read so far is beyond unacceptable.

It's good to see that you feel better about it today, I think that this forum is going to prove to be a neccessary tool in the coming months.

Ulcerative Colitis Forum

Re: Your treatment depends on the cost of medication it seems!

KEEPING FIT

Re: Thinking of Aza please read this...

Re: Your treatment depends on the cost of medication it seems!

Re: need some advice

Re: Your treatment depends on the cost of medication it seems!

Re: need some advice

Re: Another interesting fact ! Seasonal variations and flare ups

Your treatment depends on the cost of medication it seems!

Re: Anxious & Tearful, Awaiting Results

Re: D Day Tomorrow

Re: need some advice

Re: New to all this

Re: Have to make a decision!

Re: Possible UC

Re: One month after stopping the Thu, 17 May 2012 16:06:14 +0200 Author: Graham C Forum: Coping with Colitis At first they thought it was Crohns, but revised the diagnosis to probably being ulcerative colitis.

One month after stopping the steroids it is back

Re: Diagnosed today and confused...

Re: Have to make a decision!

Re: Have to make a decision!

Re: Symptoms other than gut????

Re: Anxious & Tearful, Awaiting Results

Re: Help please work advice needed

Re: Diagnosed today and confused...

Re: One month after stopping the
Thu, 17 May 2012 16:06:14 +0200
Author: Graham C
Forum: Coping with Colitis

At first they thought it was Crohns, but revised the diagnosis to probably being ulcerative colitis.