kwebster
03-12-2007, 09:24 PM
Hi! I was seeking information for my mom who is 74 and was just diagnosed with UC. What a horrible thing for an older person to go through. She was initially put on Asacal, and steroids. Of course, the roids caused her to catch colds, etc. and are not a long term viable option. Is there any viable treatments out there? I have heard of a drub called Remicade but the info is questionable on side effects. Just wondering if anyone has some thoughts. Thanks
Kathy:)
Kathy:)
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hurtie0607
03-16-2007, 03:27 PM
Hi Kathy,
I am sorry to hear that your mom was dx'd with UC. Its tough at any age. How extensive is your mom's UC - is it all the way around? What about the Asacol, was it not strong enough? There is a new med on the market I just read about. I will look it up and get back w/you. It has been used in EU and finally was approved for use in the US. I hope your mom finds relief with her sx, You are very supportive of your mom, which is good. I know of someone who is on Remacide and she seems to be doing OK. I guess this is something you will have to talk about with her GI doc. There all also dietary options to follow. I hope all goes well.
God bless-
Kay :wave:
I am sorry to hear that your mom was dx'd with UC. Its tough at any age. How extensive is your mom's UC - is it all the way around? What about the Asacol, was it not strong enough? There is a new med on the market I just read about. I will look it up and get back w/you. It has been used in EU and finally was approved for use in the US. I hope your mom finds relief with her sx, You are very supportive of your mom, which is good. I know of someone who is on Remacide and she seems to be doing OK. I guess this is something you will have to talk about with her GI doc. There all also dietary options to follow. I hope all goes well.
God bless-
Kay :wave:
kwebster
03-17-2007, 05:26 PM
Kay:
Thanks for the uplifting message. She is currently back on prednisone. I had heard about Remicade but the doc says absoltuley not. Apparently it has really bad side effects, can increase cancer likelihood and something about TB. I bought her some probiotics. Any diet tips would be most appreciated. Thanks again.
Kathy:)
Thanks for the uplifting message. She is currently back on prednisone. I had heard about Remicade but the doc says absoltuley not. Apparently it has really bad side effects, can increase cancer likelihood and something about TB. I bought her some probiotics. Any diet tips would be most appreciated. Thanks again.
Kathy:)
KingFootie
03-29-2007, 05:33 PM
Hi Kathy,
I've been taking Remicade for two months now without any problems, but my dr. intends to take me off it after the third infusion. One thing I've noticed is that if I don't control what I eat, I will still have symptoms...but not as severe as before.
ps.
bad foods for me are sweets (cakes, sodas, candy, milk..)
Good luck,
KF
I've been taking Remicade for two months now without any problems, but my dr. intends to take me off it after the third infusion. One thing I've noticed is that if I don't control what I eat, I will still have symptoms...but not as severe as before.
ps.
bad foods for me are sweets (cakes, sodas, candy, milk..)
Good luck,
KF
chris1966
05-16-2008, 07:55 AM
Hi everybody
I have been with uc for 14 months now without a break and waiting for remission but nothing , the last year has been hell, i've been on Asocol, colizide and many others. 3 courses of steroids and nothing. The consultant keeps on about an operation and that is the only cure removing all of the large bowel and colon but no guarrantee of a reversal from a bag.Three weeks ago i was offerered a week stay in hospital and cortizone injections 4 times a day plus cortizone enemas twice a day, I am now out and on another course of steroids but after two days in hospital my problem ceased, no blood, muchas or diarrea. It is so nice not to be going to the loo 15 to 20 times a day and if it means every 6 months a stay in hospital i'll take it.:cool:
I have been with uc for 14 months now without a break and waiting for remission but nothing , the last year has been hell, i've been on Asocol, colizide and many others. 3 courses of steroids and nothing. The consultant keeps on about an operation and that is the only cure removing all of the large bowel and colon but no guarrantee of a reversal from a bag.Three weeks ago i was offerered a week stay in hospital and cortizone injections 4 times a day plus cortizone enemas twice a day, I am now out and on another course of steroids but after two days in hospital my problem ceased, no blood, muchas or diarrea. It is so nice not to be going to the loo 15 to 20 times a day and if it means every 6 months a stay in hospital i'll take it.:cool:
KingFootie
05-16-2008, 09:19 AM
Hi everybody
I have been with uc for 14 months now without a break and waiting for remission but nothing , the last year has been hell, i've been on Asocol, colizide and many others. 3 courses of steroids and nothing. The consultant keeps on about an operation and that is the only cure removing all of the large bowel and colon but no guarrantee of a reversal from a bag.Three weeks ago i was offerered a week stay in hospital and cortizone injections 4 times a day plus cortizone enemas twice a day, I am now out and on another course of steroids but after two days in hospital my problem ceased, no blood, muchas or diarrea. It is so nice not to be going to the loo 15 to 20 times a day and if it means every 6 months a stay in hospital i'll take it.:cool:
Chris,
I believe you can get uc under control through diet. I've managed it and many others...why not try eliminating certain foods from your diet like all sugars, breads, milk and cheeses? That means no cookies, biscuits, bread, sodas or even foods that contain yeast extract. By following this bland type of diet, myself and many others are now med free.
I was like you, going 15 to 20 times a day before going on Remicade, which helped a little, but it was the diet that got me back to normal. I go 2 to 3 times a day and my energy levels are almost normal...if you decide to follow a diet like this one, read the ingredients on everything it's amazing how many products contain sugar and it doesn't take much to make you experience symptoms again. For most of us, sugar is the worst offender because it creates the worst symptoms quickly...you might also want to reduce your starch intake a little as well.
There's more I can say, but I've written a small book already,
Take care,
KF
I have been with uc for 14 months now without a break and waiting for remission but nothing , the last year has been hell, i've been on Asocol, colizide and many others. 3 courses of steroids and nothing. The consultant keeps on about an operation and that is the only cure removing all of the large bowel and colon but no guarrantee of a reversal from a bag.Three weeks ago i was offerered a week stay in hospital and cortizone injections 4 times a day plus cortizone enemas twice a day, I am now out and on another course of steroids but after two days in hospital my problem ceased, no blood, muchas or diarrea. It is so nice not to be going to the loo 15 to 20 times a day and if it means every 6 months a stay in hospital i'll take it.:cool:
Chris,
I believe you can get uc under control through diet. I've managed it and many others...why not try eliminating certain foods from your diet like all sugars, breads, milk and cheeses? That means no cookies, biscuits, bread, sodas or even foods that contain yeast extract. By following this bland type of diet, myself and many others are now med free.
I was like you, going 15 to 20 times a day before going on Remicade, which helped a little, but it was the diet that got me back to normal. I go 2 to 3 times a day and my energy levels are almost normal...if you decide to follow a diet like this one, read the ingredients on everything it's amazing how many products contain sugar and it doesn't take much to make you experience symptoms again. For most of us, sugar is the worst offender because it creates the worst symptoms quickly...you might also want to reduce your starch intake a little as well.
There's more I can say, but I've written a small book already,
Take care,
KF
chris1966
07-26-2008, 02:12 PM
Hi Kingfootie
Thanks for the reply i must say that i've been out of hospital nearly 3 months and absolutely fine only go once a day and ii'm off Predisone 4 weeks ago and i take Sulfasalazine 500 mg tablets twice a day and i feel rejuvenated also i eat whatever i want. i think this illnes is not a one cure suits all but once you find something to suit you go with it. Best of luck to you and all Healthboard members Chris.
Thanks for the reply i must say that i've been out of hospital nearly 3 months and absolutely fine only go once a day and ii'm off Predisone 4 weeks ago and i take Sulfasalazine 500 mg tablets twice a day and i feel rejuvenated also i eat whatever i want. i think this illnes is not a one cure suits all but once you find something to suit you go with it. Best of luck to you and all Healthboard members Chris.
k2626
07-27-2008, 03:11 AM
Anyone else get joint pain with their UC and if so can you describe it ie is it sharp jabs, does it move around, etc.
bingo lil
08-26-2008, 10:59 AM
hi cris
sorry to hear you had a spell in hospital it's really scary but once youre in ther youre in ther hands, the fright seems to go away because you no that they no what there doing, still its horrible thought but why cant they just work on finding something we could do at home instead for ourselves. by the way my name is janet and i have suffered with colitus for about thirtyfive years since i was 14 years old, i have tried asocol, salazapyrine, lopperimide,omeprazole, retention enemas, suppositries, prednisolone, and nothing seems to work the diet hasent worked either, i rely on lopperimide to stop me from going to the loo,if i dont take them for one day i get a pain in my stomache and back of my bottom, its a very horrible pain and i start taking my lopperimide again and after a day or two i get back to normal but after a few days i start getting constipated again so its a vishers circle is your colitus like this i would love to here it or any ideas would be good. janet from canvey island essex england
sorry to hear you had a spell in hospital it's really scary but once youre in ther youre in ther hands, the fright seems to go away because you no that they no what there doing, still its horrible thought but why cant they just work on finding something we could do at home instead for ourselves. by the way my name is janet and i have suffered with colitus for about thirtyfive years since i was 14 years old, i have tried asocol, salazapyrine, lopperimide,omeprazole, retention enemas, suppositries, prednisolone, and nothing seems to work the diet hasent worked either, i rely on lopperimide to stop me from going to the loo,if i dont take them for one day i get a pain in my stomache and back of my bottom, its a very horrible pain and i start taking my lopperimide again and after a day or two i get back to normal but after a few days i start getting constipated again so its a vishers circle is your colitus like this i would love to here it or any ideas would be good. janet from canvey island essex england
Harry
08-27-2008, 01:23 AM
Hi,
I was reading the IBS board and found a thread worth reading.
Ulcerative Colitis (UC) can be greatly helped with a probiotic supplement.
The thread is at the top of the IBS board --titled--- "95% Improved with VLS3"
I think all people that have UC should read it. It just may change your life.
God Bless---Harry
I was reading the IBS board and found a thread worth reading.
Ulcerative Colitis (UC) can be greatly helped with a probiotic supplement.
The thread is at the top of the IBS board --titled--- "95% Improved with VLS3"
I think all people that have UC should read it. It just may change your life.
God Bless---Harry
chris1966
09-18-2008, 09:26 AM
Hi Janet, Thanks for the reply i can't believe what it must be like for 35 years, mine was only 13 months now i'm on Salfasalazine and feel like i'm cured, but consultant said don't get to complaicent you've got it for life, thanks very much. now i've got emphasema from smoking and a blood clots caused by UC so they say.I must say half the time your a guinea pig. still so far so good and i hope it stays away a long while and i hope the same for you, keep well. Chris Cook.
SEALBEE
09-21-2008, 07:50 AM
I have had UC for over two years now.
I quit smoking 2.5 years ago and was suprised to read there is a link! ...wont be starting again though. I was also under awful pressure and depression at the time so ended up with a megacolon and a weeks stay in hospital ...which is where i found out that i had this thing called uc and i would have it forever.
for the past 2 years i have had great health and thought that they had got it wrong ..i dont take medication, but instead take the alternative/natural medications.
I am having my 2nd ever flare up now and have had to take steroids to stop the bleeding as the natural remedies didnt do anything!!!
for the past 2 months i cant keep my food in me for more than 8 hours...which is better than the first flare up, where i only managed 20 mins!i am woken up at 4am every morning and rush to the toilet where i end up visiting until 8 or 9am everday ..sometimes this continues at work! which is embarassing! everyone poos but that with these sound effects!! i have about 6 bowel movements a day at the moment! so annoying ..grrrr
Today i have decided to stop eatting and only drink complan (high cal drink) to see if this helps? maybe if i give it a break it can heal??? my mouth ulcers seem to be gone this morining so im hoping that means im getting better!
any advise? is anyone else trying to do it with medication?? or am i the only crazy one?
c
xx
I quit smoking 2.5 years ago and was suprised to read there is a link! ...wont be starting again though. I was also under awful pressure and depression at the time so ended up with a megacolon and a weeks stay in hospital ...which is where i found out that i had this thing called uc and i would have it forever.
for the past 2 years i have had great health and thought that they had got it wrong ..i dont take medication, but instead take the alternative/natural medications.
I am having my 2nd ever flare up now and have had to take steroids to stop the bleeding as the natural remedies didnt do anything!!!
for the past 2 months i cant keep my food in me for more than 8 hours...which is better than the first flare up, where i only managed 20 mins!i am woken up at 4am every morning and rush to the toilet where i end up visiting until 8 or 9am everday ..sometimes this continues at work! which is embarassing! everyone poos but that with these sound effects!! i have about 6 bowel movements a day at the moment! so annoying ..grrrr
Today i have decided to stop eatting and only drink complan (high cal drink) to see if this helps? maybe if i give it a break it can heal??? my mouth ulcers seem to be gone this morining so im hoping that means im getting better!
any advise? is anyone else trying to do it with medication?? or am i the only crazy one?
c
xx
klygrlal
11-07-2008, 10:02 AM
HI SEALBEE,
I know your pain very well. I'm 39 and have had this ugly disease since 19. The good news is I have been in remission soon to be 6 yrs. So, there is hope. I can offer a little advise for you but I would strongly urge you to see a Doctor as soon as possible. Until you see a Doctor make sure you keep plenty of liquids in you as you will rapidly dehydrate.
As for food-- eat Plain -Plain- PLAIN. Especially when you are having a flare up. When ever I have been hospitalized, I was always on a clear diet soup broths, chicken or beef (don't add seasonings) and jello. If your are like me you have no appitite at all but it is important to maintain some kind of nutrient intake. I currently take sulfasalzin 3 times a day (After each meal) when I'm having a flare up the only thing that brings me back is prednisone. I hope I am some help to you, and hope you get to feeling better soon.
Please see a Doctor!!
Take Care --kelly smith
I know your pain very well. I'm 39 and have had this ugly disease since 19. The good news is I have been in remission soon to be 6 yrs. So, there is hope. I can offer a little advise for you but I would strongly urge you to see a Doctor as soon as possible. Until you see a Doctor make sure you keep plenty of liquids in you as you will rapidly dehydrate.
As for food-- eat Plain -Plain- PLAIN. Especially when you are having a flare up. When ever I have been hospitalized, I was always on a clear diet soup broths, chicken or beef (don't add seasonings) and jello. If your are like me you have no appitite at all but it is important to maintain some kind of nutrient intake. I currently take sulfasalzin 3 times a day (After each meal) when I'm having a flare up the only thing that brings me back is prednisone. I hope I am some help to you, and hope you get to feeling better soon.
Please see a Doctor!!
Take Care --kelly smith
klygrlal
11-07-2008, 10:13 AM
[QUOTE REMOVED]
No Explanation needed.
moderator4
No Explanation needed.
moderator4
Toca2859
11-12-2008, 02:06 AM
Hi, I'm 21, was diagnosed with UC 2 years ago and have basically gone through all the stages of the disease, from diagnosis to it getting so bad that I had to spend over a month in the hospital to finally having a subtotal colectomy and pelvic pouch procedure. I hope my experience can help answer some questions for people currently going through what I have in the past.
Throughout the course of my disease I had to try a ton of drugs including salofalk and asacol pills and suppositories, prednisone (which I was on for almost a whole year!) in pills and by IV and remicade. While some meds initially worked for me, they all eventually seemed to have no effect. But if there's one thing that I can emphasize the most is don't take someone else's experience with a certain medication as the same way it will affect you. Everyone is different and what works for some people doesn't work for others. I know a few other people with UC for whom remicade or asacol has been working great. Same thing with the side effects. I didn't really experience any with the remicade, but this might be different for you.
For anyone with active UC I would also warn against using loppermide or imodium or any other drug like it. It was one of the biggest things my GI warned me not to do. These drugs have the same effects on your colon as narcotics and although they may provide temporary relief of having to go to the bathroom so many times a day, when they wear off, your symptoms are amplified, making you feel much worse and preventing any potential healing that's going on.
I guess the biggest piece of advice I can give to anyone who is going through UC as badly as I have is don't be afraid of surgery. By no means am I saying surgery is for everyone, but if you're someone like me who has tried everything else and nothing has worked, it's really a life saver. I know the thought of having to have an ileostomy for a few months might seem scary, but it's worth it in the long run because it gives you your life back. I just had the second surgery two months ago and feel 1000 times better. No more cramps, no more blood, no more urgency, no more letting your life be run by UC. Now I can eat whatever I want, I weigh more than 100 lbs (!) and can get back to a normal college life. Don't be afraid of it and they've done these surgeries so often, healing and recovery time has been drastically cut down. 2 wks after the surgery I was feeling well enough to get back to the basics of my life. My surgeon told me there's a 95% success rate, and the other 5% were people who still got rid of their UC but needed a permanent ileostomy. and when you think about it, maybe an ileostomy's not all that bad compared to a lifetime of cramps, diarrhea, meds, highly restricted diets and hospital stays.
Throughout the course of my disease I had to try a ton of drugs including salofalk and asacol pills and suppositories, prednisone (which I was on for almost a whole year!) in pills and by IV and remicade. While some meds initially worked for me, they all eventually seemed to have no effect. But if there's one thing that I can emphasize the most is don't take someone else's experience with a certain medication as the same way it will affect you. Everyone is different and what works for some people doesn't work for others. I know a few other people with UC for whom remicade or asacol has been working great. Same thing with the side effects. I didn't really experience any with the remicade, but this might be different for you.
For anyone with active UC I would also warn against using loppermide or imodium or any other drug like it. It was one of the biggest things my GI warned me not to do. These drugs have the same effects on your colon as narcotics and although they may provide temporary relief of having to go to the bathroom so many times a day, when they wear off, your symptoms are amplified, making you feel much worse and preventing any potential healing that's going on.
I guess the biggest piece of advice I can give to anyone who is going through UC as badly as I have is don't be afraid of surgery. By no means am I saying surgery is for everyone, but if you're someone like me who has tried everything else and nothing has worked, it's really a life saver. I know the thought of having to have an ileostomy for a few months might seem scary, but it's worth it in the long run because it gives you your life back. I just had the second surgery two months ago and feel 1000 times better. No more cramps, no more blood, no more urgency, no more letting your life be run by UC. Now I can eat whatever I want, I weigh more than 100 lbs (!) and can get back to a normal college life. Don't be afraid of it and they've done these surgeries so often, healing and recovery time has been drastically cut down. 2 wks after the surgery I was feeling well enough to get back to the basics of my life. My surgeon told me there's a 95% success rate, and the other 5% were people who still got rid of their UC but needed a permanent ileostomy. and when you think about it, maybe an ileostomy's not all that bad compared to a lifetime of cramps, diarrhea, meds, highly restricted diets and hospital stays.