little_tippler

So, I have had ulcerative colitis which is an Inflammatory Bowel Disease (and not irritable bowel sindrome) since I was 17 and I'm so fed up of it. Sadly it is chronic, and every two years or so it flares up. I must have had it since I was 14 but was too embarrassed until I was 17 to tell anyone (because then I began passing blood and thought, ok something IS definitely wrong here).

I have no patience with this disease. It is semi-hereditary, semi-nervous system related, and it seems to have a mind of it's own. It doesn't seem to be certain foods that bring it on for me but rather emotional upsets that make it worse, and I just wish I knew what I could do to stop it messing with my life all the time. I can offer more details on all this if some other sufferers want to share with me their wisdom.

How do you live with this disease? It really makes life hard sometimes, from having to have a toilet close by at most times, to worrying about foods (nut then it seems to make no difference what I do), to feeling awful, to being anaemic, to affecting other parts of my health, to affecting my appearance drastically (when I have to take cortizone)......the list goes on. Help, anyone?

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Whether we write or speak or do but look
We are ever unapparent. What we are
Cannot be transfused into word or book.
Our soul from us is infinitely far.
However much we give our thoughts the will
To be our soul and gesture it abroad,
Our hearts are incommunicable still.
In what we show ourselves we are ignored.
The abyss from soul to soul cannot be bridged
By any skill of thought or trick of seeming.
Unto our very selves we are abridged
When we would utter to our thought our being.
We are our dreams of ourselves, souls by gleams,
And each to each other dreams of others' dreams.

Fernando Pessoa, 1918

Gatorade Frost

I can't give any advice necessarily on dealing with the actual colitis, but if this comes about via emotional instability at times, you may want to look into seeing a psychiatrist who could prescribe something to help stabilize your emotions. A lot of people knock things like Zoloft, but it's one of those medicines that you really should consult a doctor about and discuss what's been going on with you and seeing if there's anything that they could help with.

__________________
I got in a fight one time with a really big guy, and he said, "I'm going to mop the floor with your face." I said, "You'll be sorry." He said, "Oh, yeah? Why?" I said, "Well, you won't be able to get into the corners very well."
Emo Philips

Jim Kata

I've had it for the past 17 years and have the occasional flare up.
Nothing like my father (who had his colon taken out).
What I can recommend is to drink 100% aloe vera juice. It works wonders....I have slacked off on it and can tell the difference in the past few months that I have. It tastes like crap at first but if you mix a little with some juice every day you will notice a difference after about a month or so. Trust me...it works wonders.

What kind of meds do they got you on? I have been on Dipentum 250 mg. 2x a day. Also when I have a flare up...I take prednisone which seems to really help out. Of course talk to your doctor about the prednisone, but it helps me.

Also, I recommend cutting out any alcohol if you drink. I know I should.

dlish

my uncle and his son both have crohns disease which is very similar to colitis. it flares up with them every few months or so. i couldnt say its the food (the son still lives at home and eats what dad eats) cos then they'd get flare ups at the same time, but they dont.

both are fairly healthy in high times. i know they use cortizone during flare ups, but they wean themselves off it until the next flare up. ive heard of people becoming cured of it over many years. is this true?

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dtheriault

my dad has it and has had part of his colon removed (at 55). I have similar stuff, but not as bad. My dad is a stress case and worries about everything 24/7 and never takes time for himself. He seems to end up in the hospital about every 3 months with one problem or another and fusses about it, but seems to enjoy the attention.

You've got to find time for yourself to just be yourself. I make sure I have time to read books, watch TV/Sports, hang out with friends, get sleep. If I don't then my body will break down and force me to make time for myself. So reward yourself continually tell yourself you're under doctor's orders to relax.

Both my dad and I try to avoid:
1. Large Portions (puts too much strain on the system especially gassy foods)
2. Seeds or anything small and hard that can get caught in the intestine.
3. Soda and carbonated beverages. Beer is a no-no(maybe one): vodka- not so bad.
4. Really greasy foods or foods with sugar and fat like pastries, donuts etc...
5. I also found that artificial additives played havoc. For example I thought italian dressing and ice cream were causing me problems and it turned out that it was the gum stabilizers that were the problem so I switched to homemade dressing and breyers ice cream and it was cool.


But relaxing is the key. I also find that bringing medicine with me everywhere provides a type of comfort level that allows me to relax more when I'm away from home.

Good luck.

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VitaminH

Unfortunately these diseases are not curable without flat out removing the colon, and that generally only works in ulcerative colitis and not in crohn's (since Crohn's often involves part of the small intestine too).

Inflammatory bowel disease has a lot of variation from person to person. For one, I suggest if you're not seeing a specalist (preferablly at a large university hospital where they are more the cutting edge of health care) that you see one, they can work wonders over what a primary care physician would do, or even a more local specalist.

Take your meds, by all means take them. They will help.

Pay attention to triggers. This is the hard part, because for everyone it's going to be different. You said foods don't seem to matter to much, nevertheless pay attention to what you're eating. There may be something in there triggering attacks, or at least making them worse that you didn't realize. Try and write everything down that you remember eating in the days before a flare up and do so a several, then compare. See if there is anything common between the flares.

If stress is a big cause, then obviously, avoid stress. I know this is essentially impossible, but using relaxing activities when you're starting to feel stressed (meditation, scented candles, whatever) may help stave off a flare up.

In all honesty though, if you're only flaring every 2 years, that's considered pretty good. I've seen a lot of people who have multiple flares a year and can't eat anything but a few bland foods else they'll end up sick and on prednisone to help keep the flare down. Be grateful you're not one of them.

Yes it sucks, but sometimes you just have to play the hand you're dealt right? Who knows, perhaps we'll figure out a cure in your lifetime. Be glad we have some ways of controlling it now and think of how hard it was for those in the early 1900's with UC who had nothing for it and would have bloody diarrhea all the time, eventually killing them.

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Martian

I am a sufferer of Crohn's. The good news is they're saying we're only about 5-10 years away from a cure for IBD. The bad news is they were saying that when I was diagnosed about 8 years ago.

Really, it's just a matter of accepting that the way you live your life is going to be different from how other people live theirs. I haven't eaten carrots or steak in years. I know people who love a big, juicy steak and I used to really miss it when I was first diagnosed; nowadays I look at it and it doesn't even look like food to me. I've changed the way I think.

Plan for the fact that you're going to flare up once in a while. I know that I'm going to flare up probably about once every 6 months, with occasional bad days in between. I have a specialist and I know the hours that the local clinic is open, so if I'm sick and have to miss work it's not a big deal to get a note. I have freinds and family and a contingency plan in the unlikely event that I have to be hospitalized. I pay attention to what I eat and buy and when in an unfamiliar setting I always locate the bathroom before doing anything else, just in case.

Colitis is a part of who you are now. Some people have nasty addictions, some people have diabetes, some people have an overbite or a steel plate in their hip or whatever else. You happen to crap blood every once in a while. It helps realizing that you're not alone, you're not some sort of debilitated freak; everyone has their defects, this just happens to be yours.

It's okay to get a bit pissed off about it sometimes and it's okay to get a bit depressed too. There are things that you could do before that you can't now and that's always hard to accept. Sooner or later though, you just have to accept that this is a part of your life, it's not going away and that it's really not that bad, as far as these things go. With a bit of adaptation, mild to moderate IBD can be lived with. Even severe cases; when I was in high school I had it pretty bad (my duodenum was inflamed, I couldn't eat anything for months at a time) but I managed to make it through. It's not ideal, but it's the hand life dealt me and after a suitable period of bitching and moaning I'm ready to just play it out now.

If you don't have one, definitely find a good specialist. If all your specialist is doing is treating the flare ups with cortisone, I have to question his effectiveness. There are a large number of maintenance drugs out there that will help to keep things under control without the use of steroids and those are always the preferred options. Aside from changing how you look and feel (mood swings anyone?) cortico steroids can have some nasty long term side effects, such as destroying your joints and causing bone density loss. They should be the last resort, not the first.

And get yourself a good book on the subject to read up on it. My mum bought Crohn's Disease and Ulcerative Colitis by Dr. Fred Saibil shortly after I was diagnosed and it really helped us both to know exactly what this illness is and what to expect.

__________________
I wake up in the morning more tired than before I slept
I get through cryin' and I'm sadder than before I wept
I get through thinkin' now, and the thoughts have left my head
I get through speakin' and I can't remember, not a word that I said

- Ben Harper, Show Me A Little Shame

rlbond86

I found out I had Crohn's disease last year (my senior year of high school). Really the most important thing is knowing what upsets you and learning to avoid those foods, and make sure to have a colonoscopy every few years. I know that colitis sufferers have an increased rate of cancer.

Don't feel bad -- IBD is more common than you think. We need to be thankful that we don't have AIDS or cancer.

That said, it still sucks. Accepting the problem is your best bet. I always take my medicine and feel pretty good most of the time.