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just need some words of reassurance..

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Posted 1/28/2010 4:38 PM (GMT 0)
hi...

I have only recently been diagnosed with UC and I'm off work at the moment feeling so exhausted fom lack of sleep and the steroids are making me feel crazy and panicky.

I've been looking at various websites about UC and I'm pretty scared to be honest. Is there any hope that a change of diet can make you feel better or at least improve your quality of life?

I just feel scared and don't want this to affect my life.

I know I'm not alone and am trying to stay positive wink

Also, does any one feel that Pentasa (mesalazine) is effective?

Thanks

Posted 1/28/2010 5:02 PM (GMT 0)
HI Pipsqueak,
Usually the worst time is during a flare, which im guessing you are in now. - So try not to be scared.. And I was a crazy person on pred too..lol - One minute smiling, next i was wanting to chew someones head off.
Im using pentasa (tonight!).. from memory this was affective for me, My UC is the lower left side of the bowel, so treating from the end is affective, its worth a try for you..
what meds are you on at the moment?

I honestly dont believe food (or alcohol) has an impact on my UC, well while I was in remission anyway.. Im now going to try a NON fatty diet starting today,as Im flaring.
Im also going to try some pro Biotics.. VSL#3.. I will let you know how i get on..

Try to be positive, it will help!

All the best,
M
Posted 1/28/2010 5:10 PM (GMT 0)
thanks,
I really appeciate your advice.
I'm also 29 and yeah, have UC on the left sife of my bowel too.

I'm only on the steroids at the moment and Pentasa. Are there any other meds that you recommend?

I've been looking into it and apparently slippery elm is a good remedy as well as probiotics.
Looks like I'll be rattling soon with all the pills Im goin to have to take!
Posted 1/28/2010 5:18 PM (GMT 0)
Hang in there.  It will get easier if you can get the flare under control.  Prednisone makes me insane!  I am on it now, for the second time since my diagnosis.  The first time it was for 7 months!  I didn't recognize the side effects for what they were at the time.  Now I am really tuned into them.  I am like "justwrong" on it, one minute happy, then I am crying, then I am in a rage for no apparent reason. 

I have been on Pentasa for over a year now, 4 pills twice daily (4 grams total daily) plus Salofalk (500mg suppository).  I firmly believe that the Pentasa is what helped me so much last year.  Up until then I was only on supps as I had originally been diagnosed with UP.  Then last year when I was diagnoses with Left sided colitis, I was put on the oral Pentasa. 

As for diet, if I am in a flare, I eat refined foods.  I know it is hard to accept when we know it is bad for us but you have to let your guts rest a bit.  I eat white bread, white rice, white pasta, avoid raw fruits and vegetables and try to eat smaller more frequent meals.  I can tolerate dairy and meat just fine as long as it isn't huge quantities.  I avoid alchohol completely when in a flare.  But just because it works for me does not mean it will work for you.  Trial and error...........hope and faith.........

Good luck. 

Posted 1/28/2010 6:42 PM (GMT 0)
pipsqueak,

You will have to experiment and find out what works for you. As for me, I have found that the following things help:

1. Cardiovascular Exercise
2. No refined sugar
3. Parasite killers

I am still looking for ways to feel better.


NBT
Posted 1/28/2010 6:56 PM (GMT 0)
There is a light at the end of the tunnel. There are things you can do to improve your condition and/or that can help your medications work better. Dietary changes can be helpful. Rebalancing healthy gut flora can help, too. (Treating any infections or yeast overgrowth and supplementing with probiotics.) Learn all you can about UC, how a healthy digestive system is supposed to work and look at the wide variety of alternative treatments that can support your healing. Most of all, be patient with yourself. The learning and healing journey can be a long one.
Posted 1/28/2010 7:19 PM (GMT 0)
Hi Pipsqueak --

I DO have some words of reassurance for you! First of all, mesalamine is a great drug that helped me for years. It has few to no side-effects and can keep your symptoms at bay indefinitely. If it fails you, there are other drugs that do and can work for years. Pred can help deal with flares, but push your doctor to get you off of it AS SOON AS POSSIBLE.

I was diagnosed ten years ago and I know EXACTLY how it feels to get the news. Really just raises a whole storm of questions and doubts. But trust me, life does go on. You have a new normal to adapt to, and you will adapt to it after a while.

The worst part is that colitis is really unpredictable. Some people have minor symptoms and that's it. Some people get REALLY sick right away. Most people are somewhere in the middle. So you do have to get used to a certain number of unanswerable questions. Your case will follow its own course and sometimes there is not a whole lot you can do about it. You learn to live with it and life goes on!

A word of advice -- do NOT take everything you read on-line as necessarily true of your own case. A lot of the colitis stories on the web are pretty scary. You can really freak yourself out just by reading too much of it!

Also -- you will get a LOT of advice about diet, nutrients, and so on. All I can tell you is that in my case, the positive effects of those things did not last very long. I hope you will have better luck!

Survive the flares, enjoy the remissions. If it gets really bad, as it did in my case, you may need surgery. But for me, surgery was THE ANSWER and I have been traveling and working (I am a junior high teacher) without a second thought.

Lastly, I can tell you that a situation like this actually strengthens you in ways you don't expect. Not that it's a good thing, but there can be positives that come out of bad situations.

Strength Beyond Strength!

Rick
Posted 1/28/2010 7:48 PM (GMT 0)
I remember how scared I was when I was first diagnosed.
Learn as much as you can! Check out the "advice for the newly diagnosed" on this forum.....

For diet, for the most part I find what I eat doesn't affect the disease. But when I'm flaring, I do as BCGirl said - I eat my veggies and fruits cooked (or canned, for fruits)....I eat softer foods that won't hurt going through, and stay away from gassy things (because if the gas hurts, I want as little of it as (possible) and I stay away from the things that anyone finds harder to diest - fibrous meat, corn, etc. But that's when flaring.

I just read a book called something like "What to Eat with IBD" and it also noted, again to agree with BCGirl, that in a flare I often find I need to eat more refined foods - going against most common wisdom about nutrition. I found that book helpful, actually.

A lot of folks here have specific food sensitivities, and finding out about those have helped them.

I'm on lots of mesalamine - I haven't seen anyone else who takes this high a dose! - and yes, it helps.
Posted 1/28/2010 8:34 PM (GMT 0)
Hi and welcome.

Some people with UC find that a change in diet makes a huge difference, and some don't. I'm one of the ones who, now that I'm in remission, don't find that there's anything I need to avoid that I didn't before I was diagnosed (MSG and artificial sweetners). I did, and still do, eat a pretty healthy diet, though. When I was flaring, I avoided high fiber, spicy, and greasy foods.

Yes, pentasa should help quite a bit...most people with UC have a postive reaction to mesalamine drugs, and they're actually quite safe for long-term use. You also might want to consider using rectal meds, specifically, mesalamine enemas. UC-ers who use enemas twice weekly (once they gain remission) in conjuction with oral meds stay in remission for longer than those who only use oral meds. And, when flaring, nightly use of enemas in conjuction with oral meds gets you into remission more quickly.

Where is your UC located?
Posted 1/28/2010 9:03 PM (GMT 0)
Ugh, pred. Tis evil. I swear, I am never going on that stuff again.

With diet, I find that during a flare it can help with symptoms, but out of a flare it does nothing as long as I avoid certain triggers (namely caffeine!) During flares I eat a low residue (that is, low insoluble fiber) diet to prevent further irritation of the colon. I find it works for me. Out of a flare I try to eat mostly similar foods but am much more liberal (for example, I'll have beans now and then.)

In a flare I eat cooked veggies with no skins or seeds, lean meats (especially fish), oats and oat products, white rice/bread/pasta, cooked and can fruits, and a small number of raw fruits (melon, mango, pineapple, avocado). I also do not eat fried foods or most spicy foods. Outside of a flare, I try to avoid caffeine, fried foods, really spicy things, and corn.
Posted 1/28/2010 9:29 PM (GMT 0)
Good advice all around. For me, an antifungal diet, natural antifungal supplements and probiotics were the only thing that helped me. I am now well, no symptoms, no meds. Each is different, but if there is a chance diet change could help you, you may want to investigate and experiment. Doesn't cost anything, and you may be pleasantly surprised with the outcome. No one can predict it for you. You may always need to watch what you eat, even after getting well, as I do, but the benefits outweigh the alternatives, by a long shot. Wishing you the best...........

Posted 1/29/2010 11:32 AM (GMT 0)
Thanks for all the advice everyone! It's excellent that we can all chat and support each other... I'm glad I found this website!

It makes me feel so much better to hear that things can get better. I am going to experiment with diet etc and ask my doc about meds.
I feel better today after a nights sleep and yeah, I agree that when things are good you really appreciate life.

Thank you loads x
Posted 1/29/2010 4:46 PM (GMT 0)
Well I took my first pentasa last night for the first time in almost 2 years, and it was affective.. Didnt see the inside of a toilet between 9am and 5pm (That is some going!!!).. I did however have quite a few trips before work and after!..

I noticed that I still have some predfoam at home, maybe give this a go too (from memory this was good for the first few months then seem to have no impact).. very uncomfortable to use. -

Im sure you feel like you will rattle when you walk, with all those meds.. Pred, calichew (Calcium) and Rantidine, also asacol (are you on these yet??)..BUT they will help, and you may get back to some sort of normality soon..

Had to cancel my Gym membership today :( ..wasn't able to go for the past month/two... because of this flare (suppose it will save me £40 per month!.. for my VSL #3..lol
All the best..

Marty
Posted 1/29/2010 5:40 PM (GMT 0)
My friend Dave went to a Doctor and was diagnosed with U/C. His wife was against going back for treatment and hired a nutritionist (herbs). Within a month, he was back to full health and has had no symptoms for over 10 years. Hope this helps.
Posted 1/29/2010 5:41 PM (GMT 0)
Hey!

how do you take the pentasa? Is it orally or a pessary?
I have pessarys and only on one a night.

What is asacol??
Why do you take calcium too? Sorry all these questions!!!!

I'm pleased the pentasa works for you.. well done! You are strong going to work too, I'm looking into working from home for a bit while I recover. S'pose it's my first flare so it' been a bit of a shock to the body!

That's a bit rubbish that you had to cancel your gym membership... I'm also a member of a gym... whoops, perhaps I should suspend my membership. I'ts a bit frustrating not exercising... I find I'm out of breath just walking up the stairs.. perhaps my skeletal physique doesn't help either!

I hope you start to heal soon. Good luck and thanks loads for getting in touch!

Best wishes
Lizzie
Posted 1/29/2010 5:47 PM (GMT 0)
Hm, I'm not familiar with the term "pessary." Is that an enema or suppository? Darn all the forms of the English language! :)

Asacol is an oral mesalamine (mesalazine) drug.

So you are only on rectal meds? If you were diagnosed with UC (as in your inflammation extends beyond the rectum) you may want to consider oral meds as well.
Posted 1/29/2010 5:53 PM (GMT 0)
sorry, yeah, it's a suppository..

So when i see my specialist in a couple of weeks I should ask him for Asacol.

Thanks lots!!! I'll take your advce on board!
Posted 1/29/2010 5:58 PM (GMT 0)
Well, it depends on how far up your UC is...if it's just at the rectum, managing it with suppositories is fine, and probably your best bet. If you've just got a few inches up the left side, you might get away with just using enemas. However, if it's much more that that, you really do need oral meds as well. I'm not sure if there is actually "Asacol" in the UK or not, so ask about oral mesalamine.
Posted 1/29/2010 6:13 PM (GMT 0)
will do thanks...
my UC is (I think) all along the left hand side.. From what I remember seeing when i had the Sigmoidoscopy last week.
Posted 1/29/2010 8:00 PM (GMT 0)
Hi Lizzie,
Feel free with the questions, its nice to chat to someone who is on the same level!!!! - Ive kept this thing a secret from Eveeeeeeeeeerybody for so bloody long! - Try not to do the same.
Asacol is an oral tablet, I have been taking 2 x 400mg Tablets, 6per day for around 8-10years. I was giving these first, and they seem to have a good impact on the UC. - So YES these are available in the UK. Im guessing your GP doesn't know much about this disease either (mine is useless!)
Take the Calcium tablets (chew) while you are on the pred (steroids) they are a supplement for your bones as the pred can have an impact (Yet another side affect!) .. you may be taking something similar, possibly named something else??.. If not, then your GP Should have prescribed these.. Listen to me..lol - Marty the GP!!..
The pred not making you eat eat eat?!?!.. While I was on them, i put on a half a stone!!..lol - I needed it too..

Taking one day at a time, is all we can do...

Chat to you soon!
Marty.
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