Hi Kirsten.

What do you need to know?

Well, what to expect really I guess. How long is it normally between flare ups? How long does a flare up last? Does it get worse as you get older? I'm sorry to sound so completely clueless but I thought I had haemorroids and had a colonoscopy yesterday, I came home with a leaflet the first line being "Inflammatory Bowel Disease is a lifelong illness"... I feel a bit shell shocked to tell the truth! I am over emotional at the moment I know, I'm quite badly anemic (haemoglobin level is 8) and I've been having mood swings, is this controlled by the medication for UC or does that need to be treated seperately? I'm sorry I'm rambling and seem to be coming across pretty whiney!

Kirsten,

I'm so sorry - I read your post just as I was on my way to bed and would love to give you a big, big hug and wish I could.

There are many people here who will share their experiences with you and reassure you that you are not alone, and tell you that life with this disease can still be good, it really can.

I know that by the time I wake up tomorrow and come back to this thread there'll be lots of other posts answering your questions more articulately than I'm able to right now, cos I'm bushed...

Hang in there, girl - you've come to the right place.

xxx

I don't know everything, but this is what I do know.

A flare will last as long as it wants too. When you are in the middle of a flare try a liquid diet. Ensure , gatorade, jello, broth. . . things that will give your colon a bit of a rest. Do NOT starve yourself! Stay away from spicy foods, fried foods, dairy products, pop, coffee. Really anything that you already know makes your tummy angry. Don't over eat.

Get plenty of rest. You are not whiny. You are not a baby. Listen to your body. If you push it too hard it's going to let you know.

Get some exercise even if it is just going for a walk. It might improve your mood.

Take your medication, but don't rely on that alone. I'm on Pentasa and Prilosec. I also take a probiotic and vitamins. Make sure you talk to your doctor

Some days are going to be really crappy. Be patient. You do have to change how you live. It will take time and it's not the same for everyone.

I hope you feel better.

hey kirsten, sorry to hear you have u.c. i can imagine how scared you are right now and everything. you'll get through this though. my advice right now would be just to take it one day at a time.. it will get easier though. i have to agree with evilynn... try to stay away from spicy foods, fried stuff, caffeine, dairy, or anything you notice upsets your stomach. rest. drink lots of water. excersize a little if you can. don't over do it. think positive! stress doesn't help your body.
if you have any other questions, feel free to message me, and i will do my best to help. =)
hang in there!!!

Yeah, the liquid diet is your friend on really bad days... but not as good for long term. I'd suggest keeping a food journal to track what foods cause what symptoms so you can avoid "bad foods." There are two tricks to this: each person reacts differently (that's one of the biggest frustrations and why there's no cure!) so you have to track YOUR results, can't borrow someone else's diet straight over (unless you're really lucky). And second, the digestive process can take from 30 minutes to 3 days to complete. So you have to compare your food from 3 days ago to how you're feeling now and attempt to find patterns of pain/illness.

But yeah... try a liquid diet for a day or two or three... give the tumtum some rest first... or else everything you eat is going to show as "bad."

Another couple of diets you can check out:
-BRAT (bananas, plain rice, applesauce, dry toast) is good for tender tummies. But some of us cannot handle the gluten in the toast, or the fiber in the bananas/applesauce.
-SCD (very strict diet, massive yes/no list, lots of label checking) has helped alot of people, but by no means all. Full name: Specific Carbohydrate Diet
-UC/CD avoidances (not as strict, but less particular and more individual) this is a list of "Common Trigger Foods" which are MOST COMMON among UC/CD patients to cause discomfort/flair upon eating -- this is the one I've been on and it helps most of the time... message me if you want to know the "starter" list...

I'm sure there are a lot more out there... these are just the prominent ones I know of.

Good luck!

Hi Kristen, I'm scared too, I thought the exact same thing as you (hemorhoids) and was shocked to get this diagnosis. We're all young and this is a very strange thing to have. I'm just looking forward to when we go into remission and feel better. Big hugs, kdc.

Hi Rmansker, I was wondering if you could send me the starter list of foods that are really to avoid? This is kdc123 and I was just diagnosed too.

Thank you for your replies. It's so lovely that people take the time out to try and make people feel better and give good advice. One of my mum's friends is a nutritionist and she was telling me today about 'Slippery Elm' which is a herbal thing that she says works wonders, has anyone heard of/tried it?

Thank you again everyone, it's really nice to not feel alone
xxxx

Hi Again,

I was doing research on imodium and came across a great thread on "livingwell.com" Basically, I found a number of people on there that have been taking imodium daily for 10, 20 even 25 years to help them function. One of the best points made was that we are prescribed all of these horrible things and it's almost silly to worry about an OTC that can improve our quality of life. I'm just going to be cautious with it and make sure I always have a movement a day...definitely don't want to clog things up too much. Feeling hopeful right now.

sorry: it was "healingwell.com"

Hi Kirsten-
I tried slippery elm a while back. It didn't do much for me in terms of helping my colitis, but it also didn't give me any weird side effects either. That certainly doesn't mean it won't work wonders for you- part of UC/CD is the diversity of reactions to things.
I've been warned of the risk of toxic megacolon and taking imodium while in a flare. I admit that I certainly have days where I can't get by without it, but I don't think there would be all these other drugs out there if a doctor could "prescribe" relying on Imodium on a daily basis. If anything it does nothing to control the real problem, just masks symptoms which can lead to much more serious issues. I would just use caution if you go that route.

The good news is you won't always be ill and there are things they can do to help you now that you have a diagnosis. During remission in CD and UC you will feel like a totally normal person. That's the blessing in disguise with this disease- you get a break. :) We are all here for you.