ulcerative colitis

lizziemc

hey, im new to this, someone told me to give it a go because I dont really know anyone else with ulcerative colitis. I was diagnosed with it three years ago and its been a very rocky road. Im taking pentasa, immuran, folic acid and galfer. Ive had a few bowel episodes which I ended up in hospital for. But im having trouble with some of the side effects with the medication. At the moment, im having trouble with my joints, mainly my knees and my back. Has anyone else experienced anything similiar? Is there anything anyone would recommend? Im getting fed up
Thanks

davyjose

My OH suffers from UC. She's not on boards, though. She takes Asacol, and a pretty low dose of Prednisone. I'm not sure of the side effects of asacol, or if there are any (she never complains), but the Prednisone causes pretty bad water retention. She's had it 13 years and has had pretty big impacts in her life from time to time, so yeah, a Rocky Road for her as well.
In November she gave birth to our son, and this seems to have caused added complications: she's in hospital at the moment, and came close to needing an emergency colectomy.

Have you considered having the surgery for it, or has this option been run by you?

If you have any questions, ask me and I'll ask her, as I said, she's had it almost all of her adult life, and has seen pretty much everything this disease can throw at you.

lizziemc

hi, thank you very much for getting in touch, im sorry to hear that your partner is unwell at the moment, I hope she gets better soon. It sounds like she is having a hard time of it. Im just finding it hard to cope at the moment, bowel is acting up aswell as the joint pains, rashes and constant ear, throat and chest infections. The doctors havent got a clue. I have to go in tomorrow for a check up and get my bloods checked. Dreading the thought of it.
Ive never heard of the medication she is taking? Im taking pentasa, imuran, galfer, folic acid and something for moods.

davyjose

Since then, she's back on Imuran, and off asacol. which her body wasn't absorbing, orally. The prednisone is a steroid, used to control inflammation. As it's an auto-immune disease, standard anti-inflammatories are a big no-no.

I hope i didn't scare you, this was easily the worst bout of it she's had, and it was exacerbated by having a Caesarian section. She's back out of hospital, and on the mend.

The trick, she's realising, is to watch out for the signs of a flare up. Make sure she's having regular bowel movements, and watch the diet. Aside from that, it's in the lap of the Gods a bit.

She's fortunate in a way, that her symptoms only seem to affect her locally, she doesn't suffer from rashes or sore joints, etc. Just the bowel/Colon. Of course, It's possible your medication may impact these symptoms too. Have you thought of that?

The imuran is supposed to be pretty good at controlling it, but long term she's looking at getting surgery for it. This'll be a big deal, however and we'll need to wait for the baby to grow up a bit.

best of luck Lizzie. Hope your latest doctors visit went ok.

itouchedabee

Hey - I was diagnosed with UC about 2 years ago and I am still not getting the hang of it.
I have started to take probiotics and prebiotics 3 months ago and was feeling much better. However, since 2 weeks I think I am having a bad flare-up, I lost around 15 pounds, constantly running to the toilet and now I am scared to eat anything.
I was looking into the SCD diet, which I think is very strict but I seem to be able to tolerate the chicken soup. Not sure if I will follow the diet though. But maybe something you could look into.

Davyjose congrats on the baby and I hope your partner will get better soon!

freighter

davyjose wrote: »

My OH suffers from UC. She's not on boards, though. She takes Asacol, and a pretty low dose of Prednisone. I'm not sure of the side effects of asacol, or if there are any (she never complains), but the Prednisone causes pretty bad water retention. She's had it 13 years and has had pretty big impacts in her life from time to time, so yeah, a Rocky Road for her as well.
In November she gave birth to our son, and this seems to have caused added complications: she's in hospital at the moment, and came close to needing an emergency colectomy.

Have you considered having the surgery for it, or has this option been run by you?

If you have any questions, ask me and I'll ask her, as I said, she's had it almost all of her adult life, and has seen pretty much everything this disease can throw at you.

Congrats on baby.......

I was diagnosed in feb as i knew what i had and went to a consultant straight away. i started on the steroids 12 a day. I am off them now and on asacolon 4 a day. I got relief the day i went on steroids and havent looked back since. I hope it stays this way but im a bit worried from reading other posts that i might get a flare up

lizziemc

hey, delighted to hear that your other half is out of hospital and on the mend, you must be over the moon, ill keep my fingers rcossed for you both.I think when im having a flare up, im given prednisone, thankfully I havent had to take it for a while.
You didnt scare me at all, so dont worry about that!
The last week has been pretty bad, I havent had a bowel movement and the pain has been awful. Was taking movicol which wasnt providing any relief.
The doctors visit was the same as always. They dont listen and they dont understand. Talks of doing different things but its never done. I told him the problems I was having with the rashes and the pains in my joints, told him I didnt want to take the medication, told me to stick with it. I dont know what to do at all. I dont want to go back to the hospital

lizziemc

hey there, thanks for the reply I know its tough having UC, Ive had it nearly three years and im still none the wiser. Im in the same boat, ive lost a bit of weight over the last two months, what I will say to you is though, try and force yourself to eat, little and often. When I first got it, I stopped eating and I stopped drinking because everytime I did, my stomach would hurt and id end up in the bathroom, but its the worse thing you can do, it will just exacerbate it, I ended up in hospital on a drip and the whole experience was terrible, so please try for your own sake Ive never heard of the SCD diet but I will look into it.
I hope your feeling a little better, let me know how your getting on

itouchedabee

Hey lizziemc,

I made some improvements with food for a couple of days and then it went all downhill again. Had to get off the luas and run tot he closest pub, one day on my way home from work *sigh*

I am going back to chicken soup (water,chicken,salt,carrots) from the SCD diet for the weekend, which seemed to settle my stomach. And will try to introduce some other foods. Have read about a astronaut food, which apparently helps in giving you more calories?

Have called the gastroentology clinic in st.vincent's for an appointment but the closest I got was the 9th of August - well have to survive until then

I have troubles with my elbow joints at the moment, it seems to get better if I put a warm water bottle on it. I also have really bad headaches from my medication.
Hope you find something against the joint pain, maybe a hot bath?

Sorry for rambling on! You are my first person with UC I have ever talked to.

lizziemc

hey, how are you feeling? You can rant away, its nice to chat with someone who has what I have. I don't know any. My friends are great,but its always nice to chat with someone who knows how your feeling. Ive had those kind of days too where i've had to run for my life literally. But it does get easier over time
I haven't had a chance to look at that diet yet, but I will when I get more time. Maybe stick to foods that are ok for a while until your tummy gets used to it, and then maybe introduce new foods?
Have you heard of the gastro specialist in St. James? Doctor Keeling? That's who I attend?
I haven't had much luck with the joint pain, will try the bath idea, I was given pain killers but I hate taking more than I already have to, that make sense?
My name is Lisa by the way and id like to chat with you more if your up for it

Cerocco

Hi guys, you probably have done this already but have you made contact with the Colorectal specialist nurses in the hospitals you attend. They could maybe point you in the direction of other people with UC and maybe offer some help

itouchedabee

Hi Lisa,

I am Jette
If your pain is not any better you might have to go see a doctor, as it could be an inflammation in your joints as UC affects them too and it is maybe not the medication? If it is getting worse it might be an good idea to get it checked out.

Had bad stomach cramps all weekend and then I decided to make myself a burger because it can't get any worse and we had a BBQ - funny enough that seemed to be good for me. Sometimes you just don't know what to eat. I am going to St.Vincent's as it is the closest to me. Might change, feel like they don't really try to help you

Cerocco - thanks for the tip

lizziemc

hey, how are you feeling today? Better I hope? Sounds like you had a rough time of it At the moment, ive another pain in my side and my knee is playing up which is just an added bonus. Ive been to see my g.p a couple of times and he just gives me painkillers. I hate taking more medication than I have too.
Did the barbeque food make you feel any better? At least you had fun, thats something I was actually at a barbeque too, food was lovely.
I actually wasnt aware that St. Vincents had a gastro clinic, I was given the option of the Mater or St. James, thats nearly three years ago now. I think James had the shorter waiting list at the time. Do you think that you will hold out until then? When your not feeling great?
Well I wouldnt say that mine is fantastic either, ive met one or two good doctors when I go to the clinic, but you never see them again, theyre constantly changing around.
At the end of the day, I dont think they really care, its unfair tho

Cerocco, thank you, ill check that out at my next appointment

itouchedabee

Hey Lisa,

Is your next appointment in the gastro clinic soon? My doctor is always asking me if I have joint pain and things like that, so maybe they know a bit more than the GP?!(you would hope so ) The first clinic I was in, was in dun laoghaire ( which is miles away for me). I was in St. Vincents now 3 times (have to go every 2 months) and had 2 different doctors in there so far.
I know what you mean with more medication, sometimes you feel like a walking pharmacy! I had really bad headaches a while back and they gave me a lot of painkillers which did not help but also made me feel worse.
They have to be careful with the kind of painkillers they give you, as it can worsen your symptoms.
Have really bad headaches again and a stabbing pain in my side which changes from the right side to the left side. I think if it gets worse I might just go to my GP *sigh*.

However the BBQ was nice and I tolerated the burger which was great stuff.Have not improved but I only lost 2 pounds last week.... so the weight lost is slowing down :cool:

lizziemc

hey, how are you feeling? My next appointment isnt until August, unless something goes wrong. Its not too bad, I can get in touch with the IBD nurse if something goes wrong, which is something I guess. To be honest I dont think too much of the specialist I see, ive had a few things go wrong on me, medication wise, the doctor advised me on something, but when they were called up about it, I was the one blamed for the mistake. So they wouldnt be too high on my list. I think my gp is great, he understands When you get sorted health wise, and things get a little more undercontrol, you wont have to go as often
The doctors do ask, but they never follow up on what their plan of action is going to be.
When it comes to pain, I generally try to sleep it off, and if I cant, then pain killers are a last resort. Ive been getting headaches too and the pain in my sides quite a bit too. Usually on my right side but occasionally on my left too. Just keep an eye on it and if it doesnt stop, maybe try and get in touch with the hospital? They may just tell you to go to A & E.
Thats good that you had a good time and were able to eat the food. I usually steer clear of that type of food because it generally doesnt agree with me, but I thought what the hell, and it was fine. When you cant have something, it makes you want it more, like me and ice cream That sounds like you have lost a fair bit of weight? Just try eating little and often, it does help! Ive lost about four pounds I think since my last appontment in january

itouchedabee

Heyo,

Well, yesterday wasn't too bad. Less toilet trips than in the last 4 weeks . I had some horrible stomach cramps at the evening but I just went to bad and it was fine this morning. I actually slept through the night (have not done that in a while).

Yea, it seems to be difficult to treat, there is not drug that works on everybody .Don't expect much from my specialist either, he always seems very uninterested. I hope everything goes OK until August, my appointment is in August as well. Do they weigh you every time you are there? I don't like that part because the nurse stands there with her clipboard and if you lost weight she looks disapproving at you, kinda like it is your fault :eek:.
I am actually underweight now because of the last 4 weeks so I am trying to eat more frequently, I somehow can't manage to eat big portions any more. Do you have problems keeping your weight stable? Before they discovered my condition my GP thought I am anorexic , have changed the GP since.

Can you have any dairy products? You could try to make some ice cream yourself? I am sure there are some recipes. I had some ice cream but I had to take 2 lactose tablets(I use lactrase 9000), they help if you have lactose intolerance. I crave a lot of chocolate and cookies, I just love sweets

lizziemc

hey, glad to her your improving, thats always good:) Good and bad days, would prefer more good days, but it could be worse, least we arent stuck in a hospital bed? I know how you feel, ive had a headache for the last two days and my side is playing up again today. Have chosen sleep as the healthier option.
Yeah I think the doctors preferred method of treatment is trial and error. More or less were guinea pigs until they get the combination right, which I hate!! I think with the Imuran, you can only take it for four years and then you have to change and change it to something else.
I hope that we can both last until august and nothing goes wrong on us. Ill keep my fingers crossed for you
Yeah the nurses weigh the patients before they are allowed see the doctor. That was one of the first things he said to me when he saw me? Are you trying to lose weight young lady?I was disgusted!!
The nurses dont really know what its like for us, to have this horrible disease, we cant really control the affect it has on our bodies.
Just try and look after yourself Jette, you really dont want to end up in hospital. Eating little and often should help over time, and you will put the weight back on
Sounds like we had similar incidents with our g.ps. Except mine wasnt on when I was sick, I had to see someone else. She told me there was nothing wrong with me and that my symptoms were all in my head!! I dont think they have a clue sometimes!!
I can drink milk and eat cheese, no problem, its just ice cream that doesnt really agree with me. Maybe its a good thing What kind of foods dont agree with you? I have a sweet tooth too, its awful, I love chocolate and sweets. At least were lucky we can eat those, I think we might be fairly miserable if we couldnt

itouchedabee

Wow that was harsh of the doctor with the comment that it is all in your head :mad:You kinda would hope the doctors and nurses understand you, I am OK if some friends don't get you and just tell you to eat healthy or eat a lot of cake if you want to put on weight.
But the doctor is supposed to help you with this!

I have my fingers and toes crossed for both of us Today seems to be a bad day again, I think I shouldn't had the cookies yesterday, I just couldn't help myself Thanks for the tips, I might get some shakes as well, as I have some trouble eating, like I am really full after eating a medium sized banana.

I have to avoid food with a lot of milk content in it, and not too much glucose or fructose. I think I should stay away from non gluten free things as well, still experimenting tho. Weird that you can't eat ice cream? Any kind? What about sorbet? Although that is not proper ice cream

lizziemc

hey, hope your feeling a bit better this evening? Im lucky, ive got very supportive family and friends, I dont think I would have got through this without them, that more than makes up for the doctors and nurses
When you cant have something because you know its bad for you, you want it more and sometimes its hard to say no. Like me and icecream. I shouldnt eat it but I give in every now and again.
Thats not good that you dont have much of an appetite, hopefully over the next few days, things might improve for you. Im not having a very good day myself, my tummy is at me. Its very sore and I feel sick. I dont want to take painkillers but I may have too. Just hope its not something else starting off. Have had this kind of pain about three times in the last month
You will find out over time, what foods work best and ones you should steer clear of. I was advised by the dietician in hospital to stick to a low fibre diet. I have to stay away from spicy food, burgers, processed foods, that kind of thing. There was a time when I couldnt eat cereal or fruit but I can manage it in small doses now. Any kind of ice cream, im in bits after and the bathroom is pretty much my best friend, like it is today
I havent thought of sorbet, thats a very good idea,your very clever I think ill be having a quiet weekend

itouchedabee

Hey - how is the tummy behaving today? I had to run home from the bus stop but managed on the second try. I think I will have a quiet weekend myself so, also because pay-day is next week :cool:.(might watch the Eurovision contest)

I moved to Ireland from Germany when I was 19 (that's the reason why my written English must suck from time to time ), so my whole family is over there. I got sick after living here for around 2 years. It is kinda hard when your family is away but my best friends family always say they are my irish family so I do have them - which is nice

Does your tummy feel sore when you put pressure on it, or even just stand straight and walk? Hope that goes away soon.

Have to stay away from spicy food as well, I am actually quite good with junk food but not so good with veggies and fruits. On my way home I pass by some Chinese takeaway and sometimes you can smell the curry - soooo delcious! If I can't help myself I get some with satay sauce which seems to be a bit better than the curry.

lizziemc

hey, how are you feeling? My weekend has gotten off to a very rocky start, I ended up in the hospital last night. The pain was really bad Its painful with pressure and even walking around yesterday was a struggle. The doctor said that the left side of my tummy was very hard. He gave me painkillers, antibiotics and steroids. I think if it hasnt improved on monday, ill have to ring the hospital Keeping my fingers crossed!!!
Hope you are feeling better than you have been. I have those kinda days too, its awful, but it does get better over time. You made it home which was a good thing
I was thinking that your name was a bit unuasual, but its nice though It must be hard for you, but you have the best of both worlds, you have two families to look after you, thats brilliant
I used to be terrible with junk food, but Ive gotten better since I got the UC. I wish I could say the same for my sweet tooth tho
I love curry too and some chinese too, its terrible knowing you cant have something, it makes you want it all the more.
Who will you be cheering for tonight?!?!:D Im going to take it easy this weekend...may watch the eurovision too, ill see.

itouchedabee

Jaysus! How are you feeling now, any improvements? I hope you will be better soon. Think happy thoughts like uhm ...babies with mustaches (that makes me laugh)

I was at the pharmacy today telling them my problem and the nice lady gave me some banana milkshake drinks, they have 588 calories per portion (that should help me put on some pounds) will try it out tonight.

I am cheering for Ireland as I haven't heard the German song yet, of course if Germany is better than Ireland I'll say I cheered for them :cool:

lizziemc

hey, im in a bad way at the moment, a lot of pain, havent felt like this in a long time. Im trying to stick it out until monday, that is when I can call the nurse in the hospital, keep your fingers crossed for me:( Ill try thinking happy thoughts, im just finding it really hard to get comfortable!!
What is the name of the milkshake? I had to take one a long time for weight loss. Let me know how you get on with them
Ireland didnt do too good so congratulations!! The german song was pretty catchy, unlike some of the other ones Ill keep you posted and let you know how I go over the next couple of hours

itouchedabee

Hey, how are ya doing today? Is it still bad? Did ya call the nurse? There is no new post since Saturday so I am worried!

lizziemc

Ive been in hospital most of the day and im exhausted!! I rang the nurse who told me to go up for bloods and to go home afterwards. My mum wasnt happy with that and told me to go into see the nurse. She got me in to see a doctor. Sent me for an xray. Not very good news. Problems with my bowel functioning again. More medicine and the possibility that I may have to have one of my favourite procedures done again This has got to be one of the top ten crappiest periods of my life, in more ways than one, not just healthwise.
Im in bed, waiting for the medicine to kick in.
Hope your feeling ok and the milkshakes arent to bad

itouchedabee

That totally sucks worm anus!!!!!!!!! But I am glad to hear ya still alive

Hope the medication started working and you don't have to go back to the hospital! I am glad ya mum got you to go see the nurse, at least now ya know what's going on, and it might get better now - fingers crossed. When do you know if ya have to go back?

Milkshakes are OK, not getting better but also not getting worse. Discovered I can make it home in around 10 minutes from the Luas stop, if I really have too. UC can't be good for our mental health I am telling ye, I feel like I never want to leave my house again. :mad:

lizziemc

hey, glad to hear from you Also glad to hear that your doing ok too, it might take a while for things to kick in for the better, ill keep my fingers crossed for you that things will keep improving.
I only had to take the medication for two days, ive got something else to take if things go bad again, which hopefully they wont. A girl can only take so much!!!!
Still a bit uncomfortable painwise, but nowhere near as bad as it was. I have to go back to the hospital in three weeks, sooner if anything goes wrong
Its always good to know that home isnt too far away should an emergency arise. Its good that you can get home relatively quickly:)
Yeah UC in a pain in the neck. both physically and mentally. Id give anything to go back to the days before all this started Im at the stage now where I dont really want to be outside my house, just incase I have any little mishaps On a slightly more positive note, any plans for the weekend?

itouchedabee

Good to hear form you :)So ya feeling a bit better now?

At least we have good weather :cool: I have really bad headaches again but the gut is the same bad in the morning but OK for the rest of the day, that is OK by me.
I took today off so I might just sit in the garden for the rest of the day and work on my tan so I at least look healthy. Was invited to a house party on Saturday, might go, friend needs me to be his wing-man(well wing-woman). It is on a rooftop which would be great if the weather lasts. Not sure if I will drag myself out of the house tho.

I sometimes wish to be normal (sounds weird), but I just want to be able to eat something and then not frantically look for a toilet just in case. Or every time you go out to make you sure you know exactly where the toilets are and how to get there.

And you any plans?

lizziemc

hey, how are you feeling? Sorry I was at a music festival from saturday until today. I must have been insane. The music was brilliant but I was in a fair bit of pain on saturday night and sunday night, I could barely stand again I tried everything, from peppermint tea to painkillers, fell asleep eventually
Hope your head and your tummy are doing abit better. Its always something, its never just the bowel, unfortunately!!
Your lucky that you dont look sick, im look ok most of the time, but when I feel bad, I go as white as a ghost and people, mainly my mum, can tell by my eyes how I feel. Doesnt help when your pale skinned anyway
Did you make it to your party? Did you enjoy your long weekend?
I know I feel the same way, Id give any to go back to the way I was before all this ill health started. To be constantly on your guard is an awful pain in the neck. hopefully our luck will improve well its a nice thought anyway

itouchedabee

Hey Lisa,

Wow you went to a musical festival(didn't know there was one on)? I would never dare going because I am afraid of getting sick and all, but you did it!!! Did you enjoy it at least even with the pain? Are you better?

My best friend can tell when I am not feeling well, I always go quiet and he says he can see the blood drain from my head. I think I look not sick for most of the time maybe just a bit worn out and tired but most people look like that.
The house party was great fun, we had good weather too! Managed without running like an eejit to the toilet. However I wasn't a good wing-woman, have to work on my skills:cool:. And hey only a 4 day week until the weekend

lizziemc

Howdy again I dunno what sort of music your into, Im a rocker at heart but my boyfriend is introducing me to new music. The festival was on in mullingar. It was trance, house, raggae, music like the prodigy and pendulum? If youve heard of them, you would have an idea of what music it was like. I was having a good time until the pain came back with a vengeance
I generally tend to stay from those kind of events but like yourself, im petrified of something going wrong on me. I didnt enjoy the toilet situation at all. I do go to gigs, but its never been an all nighter kinda thing, usually couple of hours and then home again. Would make sure I didnt eat or drink a whole lot when I was there.
The pain is still there today but nowhere as bad as it was last night. Ended up sleeping in a tent with one of the other girlfriends. She was great.
The weather was nice for most of the weekend, but its miserable here again. Glad you enjoyed the house party, ive never actually been to one, how sad is that:D Four day work weeks are the best kinda ones, arent they?

itouchedabee

Heyo!

Oh yeah I am more into Soil, Drowning Pool, Disturbed, Korn etc. could go on all night :cool: But I guess it never hurts to get introduced to new bands, like a few songs from the prodigy(my ex bf introduced me to them).
Glad ya feeling a bit better, fingers crossed this is going to continue. I am the same as you even if I go to the cinema I avoid eating before and will not eat during the movie - just water!
Well it saves money as you don't buy all these expensive sweets in the cinema I guess. It is really hard sometimes to do things that are outside of your comfort zone, haven't been to the cinema in ages, although people leave to go to the toilet all the time. I always feel like everybody is watching me when I go - which they are not, they have better things to do.
Not been to too many house parties myself but they can be fun, especially if you don't have to clean afterwards
Do you have any plans for the weekend? Can't believe it is already Wednesday, it feels like a Tuesday to me.

Tonto86

Hi Folks,

I'm 24 and been diagnosed with UC 2 years ago. Had a pretty rough 2 years before that but now i think i got it pretty much under control.

Before my diagnosis I would have to sprint (and i really do mean sprint) to the toilet on average 7-8 times a day (my record was 13)

I had constant bloating, sometimes unable to hold myself upright due to the pain in my lower abdomen and I lost weight at a ridiculous rate (I went from 12 - 10.5 stone, Im now back to 12.5)

My doc has me on Asacolon 800mg twice a day, I do still get flare ups but nothing near what i used to. I even have weeks when i only use the toilet once a day!

I've learned a fair bit over the past two years of what I have to avoid (im not saying this will work for you, IMO UC diets vary from person to person)

Brocill, sweetcorn, mushroom (no idea why but my bowel hates all of theses!)
Any peal of and fruit or veg (sticks to the wall of the bowel, causes inflamation)
Very spicey food
Gluten (this is a big one, it really involves anything involving wheat but gluten is in a lot of possessed foods. I.E. Most cooking powders, some rice mixes, fozen chips/chicken/fish. Best bet is to read the back of the pack!)

I know this seems limited but really its not. Here's some of what I'd eat daily.

Kelkin Porridge (wheat free, made with rice, tastes the same tho In every Tesco)

Eggs (scrambled, boiled, poached.... ya gotta love eggs)

Chicken (get some breasts from your butcher, flavour them yourself or get some pre marinated ones)

Tuna (splashings of mayo, ya cant go wrong! High in protein and fat)

Skinless potatos with feck loads of butter

Steak (in anyway shape or form ya gotta love steak)


If ya stick to basic foods, try to eat several small meals a day and thoroughly chew your food its seems to be easier on the bowel to process. This has taken me from scrawny with no energy back to my normal self!

Hope this helps someone, sorry for the essay type post!

CarrickMcJoe

Hi there
I was also a UC patient Diagnosed when I was 20. Not much known about it then. Had all the bloating and running to the toilet etc for 10 years then had a Collectomy. My weight plummeted to 9 stone.
Was on 20 tabs a day Salazopryn (8) and Prednslone (12) which caused water retention and I always looked bloated.
In the end I experienced a fissure which meant I had to have a full Colostomy. I have to say it was like a huge weight was lifted from my shoulders. For the 1st time no running to the toilet and worrying if it was occupied.
Its 13 years since my operation and I can still eat anything I want, thats not to say it still gets me down some days but I can now enjoy a Metallica concert now. The good thing now is you can find more out through the web and forums.
Good to see you sharing your experiences. If you ever need advice about anything to do with UC, dont hesitate to ask. I read today that scientists have narrowed down the cause of irritable bowel so they are getting closer to a cure which im sure someday we will see.
Good luck to you all.

itouchedabee

Hey Tonto86 I think I might just try some of your ideas.

Funny enough broccoli seems to be alright for me sometimes I just eat broccoli for lunch..yes only broccoli But yes I have to avoid salads and most fruits. Banana and pineapple are OK, strawberries are a big no no for me the same with grapes or apples - even peeled. All the junk food seems to be OK too. Well except the curries
Wow like going to the toilet like a normal person...that's something I dream about at night It is good to hear that this is possible.

Hi CarrickMcJoe

I agree the internet helps a lot with the research and understanding of the disease I am not sure what I would do without it, it even offers some great support groups (well I found some on german sides so don't think this would help any irish users now).

I am glad to hear that you can enjoy all the tasty food again...how i miss piggin out. I am sure it is also a great relief to be able to go anywhere without frantically looking for a toilet. I think the stress caused by making sure you will always have a quick access to the loo makes the UC a bit worse sometimes.

Sorry for the late response I don't check in here this often since I have found Lisa on facebook.

shawnee

Hi, just browsing and saw that threat on colitis. Have this for around 15 years now. It has got a bit worse now that I have Just passed 50 but then again that is probably to be expected. I have only been hospitalized once with it and on that occasion I probably neglected it a bit and become totally dehydrated. Recently I have got a good deal of joint pain (back , neck etc) this is relatively new to me. I am back on the usual prendisolene and have increased Mezavant to 4 daily. One other symptom is that my eyes get quite tired so am taking steroid eye drops at moment also. Thankfully after three weeks of this, the conditon seems to be improving.
Diet is hit and miss, when I'm right, I can eat anything when it's wrong nothing workds:p
Good to share experiences on the forum and hope all you other sufferers are going through better times at the moment.

bridetobeone

My sister was diagnosed with UC last year,within that year she has had 2 bad flare ups and on this second one is on her 2nd week in hospital. She was on a ridiculous amount of steroids a week,Asacolon 80 tbs. She is very weak and is suffering terribly.She is new to the disease and they just don't seem to give a damn in the hospital. She has been waiting for over a week for a dietician to see her,until then she is being given all the wrong foods which she cant eat. Im in the UK and just feel so hopeless,she's my kid sister with 2 kids under 3 and it seems like she's just left there to suffer. She knows what foods not to eat,but if anyone had any recipe's it would be great. At the moment she is getting very tired of plain chicken and baked fish for dinner every day.
Sorry about he rant! I don't think theres a lot out there for UC sufferers and she's at her wits end and the doctors don't seem to be communicating with her at all..

Thanks

-Corkie-

bridetobeone wrote: »

My sister was diagnosed with UC last year,within that year she has had 2 bad flare ups and on this second one is on her 2nd week in hospital. She was on a ridiculous amount of steroids a week,Asacolon 80 tbs. She is very weak and is suffering terribly.She is new to the disease and they just don't seem to give a damn in the hospital. She has been waiting for over a week for a dietician to see her,until then she is being given all the wrong foods which she cant eat. Im in the UK and just feel so hopeless,she's my kid sister with 2 kids under 3 and it seems like she's just left there to suffer. She knows what foods not to eat,but if anyone had any recipe's it would be great. At the moment she is getting very tired of plain chicken and baked fish for dinner every day.
Sorry about he rant! I don't think theres a lot out there for UC sufferers and she's at her wits end and the doctors don't seem to be communicating with her at all..

Thanks

I hope she improves. I started on 12 steroids a day(60mg). I was on them for 3 months and I am now on 4 Asacolon a day(3200mg). Have to say I am in good shape since. How many Asacolon is your sister on op.

shawnee

Just finishing a course of steroids and getting headaches , limb and neck aches for the last few days. Also getting blurring in the eyes. Was fine while on the steroids but always find it difficult when coming to the end of the course. I am on Mezamat which is mesalazine 4 a day at moment. Haven't heard of Asacolon but I presume they are similiar (anti inflamatory). Glad to hear that they are working for you , I will mention them to my doctor at next visit.;)

-Corkie-

shawnee wrote: »

Just finishing a course of steroids and getting headaches , limb and neck aches for the last few days. Also getting blurring in the eyes. Was fine while on the steroids but always find it difficult when coming to the end of the course. I am on Mezamat which is mesalazine 4 a day at moment. Haven't heard of Asacolon but I presume they are similiar (anti inflamatory). Glad to hear that they are working for you , I will mention them to my doctor at next visit.;)

I am a bit worried about your eyes. My consultant told me go straight to A+E if that happened to me...

shawnee

Ah am not that worried about it. UC can affect any of the mucous membranes so although it is unpleasant it is not unusual. I am however feeling pretty shattered after coming off the steroids. As regards to diet and UC , my own experience is when it's wrong nothing I eat will help and when its right I can eat anything.
However during a severe outbreak it is better to eat bland food.

Moreofthatjazz

i dunno how relevant this is but i think ive had a minor epiphany over the last while regarding my uc. i was diagnosed 3 years ago, one year or so after i had given up smoking and about 8-10 months of having symptoms and a misdiagnosis thrown in for good measure... initially diagnosed as hemorrhoids and put on a high fiber diet which i unfortunately stuck to even though symptoms were getting worse and worse... eventually hospitalised reluctantly (very grateful to a g.p. at a walk in clinic for that one)... initially i was put on i.v. steroids... then pentasa with no effect... upped the pentasa to 2g orally and in combination with enema pentasa and suppository.... still no joy... back on steroids ... minimal relief... at this point i decided to take things into my own hands... i started smoking again (not great i know) during a relatively good period, looked at my diet and eliminated wheat/gluten completely also anything with malt in it... vinegar is a killer for me but luckily i react on my lips if there is anything that may be too severe... unfortunately mouth ulcers were a constant (even prior to diagnosis), probably worse than the other end... all in all i stabilised, stopped taking the pentasa and maintained a balance, just... little things can trigger a flare up but smoking (cigarettes) really helps for me...

Now this is where it gets interesting, after a lot of research and hypothesizing i figured to try vit. d3 in largeish quantities 2200iu, my reasoning behind this is when i was younger i had anther auto immune disease (psoarisis) which i eliminated completely with the use of a sunbed, the main reason is the u.v. stimulates a massive increase in vit. d3 production in the body, which in turn has huge benefits for the immune system... the research is on the web... and from my experience so far is good if not great... i honestly have not had as good a couple of weeks in the last five years (long prior to diagnosis)... im putting this out there... i am not a medical professional, i am a messer who refuses to believe their body would debilitate them without good reason...
i've just found this thread, so i'll let ye know how i go with it over the next while...
peace
frank

shawnee

Interesting, I assume you are talking about taking vitamin d3 in large quantities. Funny you mentioned cigarettes . I don't smoke but I did read some research that smoking did sometimes assist those with uc and reduced symptoms. Let us know how you are doing. I do believe you are you;re own best doctor.:p

thegreengoblin

Hi all,
I'm 37 and I had UC from 1995 to 2000. It's a dreadful disease which is very hard to explain to someone who has never experience of it. I had a few bad bouts in those years which required hospital stays but in the end I decided to go for J-pouch surgery. I've only scanned through this thread but I don't think I've seen J-pouch surgery mentioned. It's basically where they take out your colon but leave your small bowel in and make that into a resorvoir or pouch which acts kind of like the old colon did. But of course it's much smaller and therefore I still need to use the bathroom quite a few times a day. In most cases the surgery requires that you wear an ileostomy bag for a period of time....in my case around six weeks but this can vary a great deal.

The benefits are that I no longer have to rush to the toilet and, mercifully, I don't need to take steroids. The surgery is not for everyone and obviously if you can manage your UC comfortably then that's great. I wish I could have done that but it wasn't to be. However, at least I know that the uncertainty is gone and I can still lead a fairly normal life. It can be a pain going to the toilet a lot but with meds like immodium and a proper diet the bowel motions can be greatly reduced.

As I said it's not for everyone - this is major surgery - but I have no regrets about taking the decision. If anyone would like some advice or guidance feel free to ask. Take care.

empirix

glad that surgery worked for you, my sis went down the same route, unfortunately she started getting flare ups after a few months and now has to have surgery again. Terrible disease, hope you all feel better soon:)

thegreengoblin

Hope it works out okay for your sister. Is there anyone else here who has had the J-pouch operation?

scargill

I'm tagging on to this thread - slightly OT but as this is the most recent UC thread it has a relevant audience.
Brief synopsis:
Diagnosed 12 years ago. Very ill for 2 years, grand for 8. Very bad C.Diff infection 2 years ago was back to square one, all settled down again now.

I'm on Asacol and Salofalk enemas.

It's costing me €120 per month (under the DPS).

Has anyone sourced mediction legitimately elsewhere?

NOTE TO MODS: not talking about dodgy sources - just wondering if anyone has got their prescriptions filled in Northern Ireland for cheaper.

Thanks

questionsabout

Hi, sorry to hear all the people on here suffering..
I have Crohns myself but use the Specific Carb Diet. Got me off meds after a few months...never had any ops.... and I seem to be doing a lot better than most I know on meds, some family members and some friends...

anyways.. I posted on Crohns on this site today... there is a cure out there for many conditions...I don't want to post it here as I do not want to be accused of being a spammer... I just want to get a message out to as many people as I can.. granted not all will be into it...but hopefully some will realise this is the way to go..

peace and good health to you all:)

elainee40

Hey all hope u dont mind if i jump in. My partner has UC he has it since about 19 or 20 hes now 36 :eek:.
He never seems to be out of remission with it and is consent battle to see were nearest loo is and rushin.
Back in oct he ended up in hospital again as he was getting sick blood so he went in himself, he had been getting sick for few months prior to this, this i always see as a visit to hospital as it happened before. He was in naas hospital for about a month in 2008 and in portlaoise for just over 2.5 wks in oct.
He had to colonoscopys in portlaoise and on the first one he was told his bowel is in serious danger of closing up so they wouldnt let him go home and had to be monitored. his second conoscopy he had improved so they let him home. he was then referred to naas specilist.
Its quite hard here as we have two very young kids, one min he is ready for op next he isnt.

CarrickMcJoe

elainee40 wrote: »

Hey all hope u dont mind if i jump in. My partner has UC he has it since about 19 or 20 hes now 36 :eek:.
He never seems to be out of remission with it and is consent battle to see were nearest loo is and rushin.
Back in oct he ended up in hospital again as he was getting sick blood so he went in himself, he had been getting sick for few months prior to this, this i always see as a visit to hospital as it happened before. He was in naas hospital for about a month in 2008 and in portlaoise for just over 2.5 wks in oct.
He had to colonoscopys in portlaoise and on the first one he was told his bowel is in serious danger of closing up so they wouldnt let him go home and had to be monitored. his second conoscopy he had improved so they let him home. he was then referred to naas specilist.
Its quite hard here as we have two very young kids, one min he is ready for op next he isnt.

I was also 19 when I got colitis. Everything you say is exactly as it went with me. Going to hospital for blood transfusions every few months, always need to be near a toilet, etc.
Do you know anyone who had the op, if so have a chat with them. I was given the name of one guy and I phoned him, he put me at ease.
I was not keen to have it done, said id die first.

In the end had a collectomy where they took out part of the bowel but wasnt a success so ended out having the full colostomy op.
That op was 3 weeks after my son was born.

Its a tough operation but the relief when I woke up in ICU and for the 1st time in 10 years not to have to run to the loo was heaven.

Now 14 years later I hav nt seen a doctor since, no tablets, no clinics and my bloods my own. (think I should be able to give it now).

Good luck whatever your decision.

elainee40

hey carrick

Thank you for ur reply, my dad had an op but for diverticolitis and his brother is having one for chronhs in jan but they not the same.
He like yourself has had the blood transfusions etc.
Glad ur op worked for u hun its a hard thing to live with