ulcerative colitis

dungay

Hi there....I'm just after coming across this site and I'm shocked/surprised to see so many people in Ireland with colitis...for a time I really thought I was the only one!! I have had colitis the last 7 yrs, it's a horrible disease and friends and family don't really understand it, parties and even calling for a cup of coffee can be a mind field with people pushing sweets/pop/biscuits or cake on you and trying not to offend by saying no..several times sometimes. I am taking 4g of pantasa a day, in the granular form, I was taking prednisone enema for I guess 5 yrs on and off, mostly on, if I came off it the symptoms would flare up and back to sq one again, I read somwhere about Manuka honey being good for colitis and other digestive problems, I took one spoonful in the am on an empty stomach and one in the pm before I went to bed, the result was nothing short of a mircle!! It felt like the ulcers dried up almost over night, I was able to sample forbidden foods again, albeit maybe a chocolate sweet once a month and the same with alchol. I went a little over board at christmas, and thought I wouldn't be able to control it but I got the strongest Manuka honey +25 from holland and Barrett and took a large spoonful before every meal, I have been able to keep it under control and not have to go back on steroids which I was really worried about. I still take 4g of pentasa daily, it's working for me and I thank God that it is, it really is a horrible stressful disease, I just thought I'd share my story with other colitis suffers and if it helps even better

shawnee

Interesting about the Manuka honey, I read that it had anti inflamatory properties alright and am pleased that it is working for you. I suppose you are also watching what you eat/drink and that helps also. Am on Imuran myself having had colitis for a number of years and so far so good with this drug

dungay

Hi Shawnee, yes I watch what I eat, I don't have anything sweet, no treats, maybe the odd packet of crisps, I also avoid all fruit which is hard as I loved grapes and berries, I eat veg but not a hugh amount, I eat White bread, dosent seem to aggrivate it, I have the odd beer and glass of wine, if I stick to that it's fine and the honey has really worked for me. The drugs your on, are they immune suspressant drugs, in the beginning I was tried on a few drugs but none of them worked.

It's fantasic to have a forum like this to talk to other suffers, people who know what it's like and can offer support or advice.

wild_swan

Hi!! I've Crohn's so I never had a look on this thread before!

But I'm trying to organise an informal support group/social group for people with IBD in the Midlands.

The Facebook page is very originally entitled 'I have IBD Support Group'
so come 'Like' the page @ http://www.facebook.com/pages/I-Have...2375016?v=wall

The idea is to meet up with fellow IBD-ers!! just something informal (tea, coffee, whatever takes your fancy!!) A few of us met up last wk & we're going to meet again in March.

So anyone with IBD - Crohn's or UC - who is in the Midlands is more than welcome to attend & bring friends & family if you like!! Though we won't be regionalist - If anyone else wants to travel to us you're also welcome, the more the merrier!!!

Feel free to PM me about it if you like, or drop me an email (again originality here, how I came up with it I'll never know!) @ ihaveibd@gmail.com

Thanks & Take Care!!

shawnee

dungay wrote: »

Hi there....I'm just after coming across this site and I'm shocked/surprised to see so many people in Ireland with colitis...for a time I really thought I was the only one!! I have had colitis the last 7 yrs, it's a horrible disease and friends and family don't really understand it, parties and even calling for a cup of coffee can be a mind field with people pushing sweets/pop/biscuits or cake on you and trying not to offend by saying no..several times sometimes. I am taking 4g of pantasa a day, in the granular form, I was taking prednisone enema for I guess 5 yrs on and off, mostly on, if I came off it the symptoms would flare up and back to sq one again, I read somwhere about Manuka honey being good for colitis and other digestive problems, I took one spoonful in the am on an empty stomach and one in the pm before I went to bed, the result was nothing short of a mircle!! It felt like the ulcers dried up almost over night, I was able to sample forbidden foods again, albeit maybe a chocolate sweet once a month and the same with alchol. I went a little over board at christmas, and thought I wouldn't be able to control it but I got the strongest Manuka honey +25 from holland and Barrett and took a large spoonful before every meal, I have been able to keep it under control and not have to go back on steroids which I was really worried about. I still take 4g of pentasa daily, it's working for me and I thank God that it is, it really is a horrible stressful disease, I just thought I'd share my story with other colitis suffers and if it helps even better

Will give that Manuka a try from tomorrow and hopefully it will do the business.

dungay

Let me know how you get on with it, it would be interesting to see if you notice any change in your condition.

Ciara D

The ISCC Youth Group is now up and running and is looking for members to join us. So if you are aged up to 30 (or thereabouts!) we want to hear from you! Our aim is to bring together younger people with IBD so you know you are not alone.

One of the things people miss most is having others that they can talk openly with about their experiences and to learn about different ways of coping with the condition. We have all sorts of plans to change this. So get in touch if you want to be part of it... or please pass this message on to other young people you know with IBD.

isccyg@gmail.com

Boggie

Hi There,
I was diagnosed 3 years ago with UC. It was very mild at first. I got a bit careless with the meds last year and it got totally out of control, ending up with 6 weeks in hospital (up to xmas last year), 9 pints of blood and steroids every which way. Was very close to losing my large Int, but luckily they gave me Infliximab as a last resort. It worked almost straight away, now I get an IV every 2 months, and with 4mg of pentasa daily (and salofalk as a backup) everything seems to be ok.
I'm still stiff and sore in my joints, but it seems to be easing. No diet restrictions necessary so far.
Is anyone out there on Infliximab? I'm keen to know how long this will last, and if anyone has any good or bad feedback about this treatment.
Also has anyone any suggestions about how to help the stiff joints?

homer33

Have been diagnosed with ulcerative colitis and am taking pentasa and coloform for the moment before going back to see the consultant for an update. Am suffering badly from mouth ulcers for the last year, and cannot find a cure for them. apparently it is a side effect of UC (not a common one) but the pentasa is not helping. i have tried every type of mouthwash, flagyl, betnesol, daktarin gel, and codeine painkillers but nothing seems to work. they will flare up for 4 or 5 days and go away for a couple of days before coming back

Does anyone else suffer and have any cure?!

rugbug86

Have you tried bongela? I find that to be brilliant for mouth ulcers.

chazzywhazz

hi i have UC with few years when i used get them it was when i was having realy bad symptoms.. i used eat natural yougurt and put ambesol liquid on them corsodyl mouthwash also but they used still appear but last less and less.

camroc76

Hey OP,

Can I recommend that you get your iron levels checked ?..Might be affecting the ould immune system and therefore all the mouth sores as I tend to only get them after a flare-up and when my iron levels are low !. Other that than, plenty of natural yogurts and the like !

Stay Positive !

C.

LegacyUser

Sorry to hear of your diagnosis, The SCD diet is very helpful for easing your symptoms and has a proven track record, google it.
I find for mouth ulcers that breaking a capsule of good quality probiotics into your mouth at night is helpful as well as cutting back on starchy foods as per the SCD diet. Good luck.

asjm

Hi all,
I was diagnosed on Monday with having UC, bit of a shock for me, as I really dont know much about it, little bit of history first, my mum has crohn disease for the last 34yrs and i have two 1st cousins with UC and Crohn/UC..
for the last 3yrs i would have suffered in a different way, severe consitipation, doc put me on movicol - improved dramitically! roughly 3 weeks ago symptoms changed and it went in the other way running for bathroom etc, bleeding etc, with everyone telling me I had a terrible colour like death warmed up! and then i got a pain in my left hand side which I ended up being hospitalised with, kept for 3 days, giving i.v antibotics + a drip, when discharged I was giving pentasa granules to take twice a day + prediscone for 8wks ( reducing dose) + zoton?

so far stomach is good and bad, at night i could be up to the bathroom between 2-8 times during the night, and during the day, it's not to bad.

I'm going back next Tuesday to hospital to have a full scope done to find out as to what form of UC it is and after that I think they're is another test to be done,

Food wise - curry/cheese/pork chops/ ice cream:mad: are big no no's- learnt that the hard way

any other pointers would be great?

Thanks

SATSUMA

How is UC diagnosed?

My uncle is in hospital and the doctors said he had UC. Now they have taken a biopsy of the ulcer. I presume they think it could be something else. Just wonder what is the diagnosis procedure?

asjm

Hi Satsuma, how's your uncle doing?
from my experience, UC was flagged by a blood test, showing signs of an infection, then I had a colonoscopy done which showed that my bowel was badly inflammed, (all this was done as I was hospitalised) they took biopsy's that day and that evening leaving the hospital after having the 1st colonoscopy done the doctor said from the photos of my bowel it may look like i could have crohns or Uc so I was put on a course of tablets (i'm still takin them) met with the doctor 10 days after leaving the hospital and he informed that from the biopsy's it was UC. so now the next step is to find out how severe the UC is and to do that out that I need a full colonoscopy which as it happens will be tomorrow!!
Great fun

SATSUMA

Hi asjm, best to get it sorted even if it's a bit ahem, uncomfortable!

Unfortunately my uncle's biopsy told a different story. He has stomach cancer, but its early and hasn't spread. Hopefully things will be ok after treatment. Poor fella.

It's just really important that we each know our bodies really well I think. And always use gut instinct!!!

homer33

Thanks for the tips, have tried corsodyl (and finds it really stains teeth!) but will try the probiotic. Have been almost ulcer free for 2 weeks after bout of antibiotics so maybe the start of a break from them

homer33

i have been diagnosed with UC after having symptoms for about a year. i find exercise really helps control the symptoms - some days you do feel really fatigued but i find the exercise makes you alot less tired overall. I took a break from sport for a couple of weeks when the UC was really bad and actually felt worse!

also find a regular diet (not too high fibre) and limiting alcohol helps too.

asjm

Hi Homer33,

i used to suffer terribly 2/3 yrs ago with mouth ulcers, i was cursed with them, i found Anebsol a great relief, it would numb the ulcer so you could eat, also gargling with disprin works (my mum swears by this - she suffers from crohns). hope this helps!

panoke

hey Lizzie. Ive had UC for 10 years and still none the wiser really. But have you checked out the Crohns & Ulcerative Colitis Ireland's facebook group...pretty good for asking Qs and updating on all things IBD. Might be worth a look :rolleyes:

allanmathews

http://www.facebook.com/groups/106491930028/

This group on facebook is for anyone that has IDB or for the family and friends of anyone with IBD