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I dont understand this Uc well enough to explain it to my family and friends can you help me ?

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Ulcerative Colitis
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Posted 9/9/2008 2:39 AM (GMT 0)
I have a friend who is also a business partner so we travel allot so I had to tell her. Im having the hardest time trying to explain it because I dont really understand it.

she asked so many good questions and despite all I have read its hard to translate it into easy to understand explainations.

Shes had trouble understanding why I cant eaqt high fiber food yet awhile back I was takign fober to stop the diareha and it helped. The other day I ate brocholli and a rice pilaf with sliced alomds and one of the 2 made me really sick. Even I dont understand what I can eat because Ive had fish and chips and had no problems yet another fried food might give me a bad stomach ache.  No dairy has been a pain becaues I love cheese but I must say my stomach noises and gurgeling has gone mostly away.

Today I ate part of a quisnos turkey sub NO CHEESE and 6 hours later bad stomach ache and gas could it be from something I ate 6 hours ago?

Whats you pat explaination you tell people when the need arises?

 

Post Edited (mom4321) : 9/8/2008 9:38:21 PM (GMT-6)

Posted 9/9/2008 2:48 AM (GMT 0)
Well I sorta feel like I screwed up today. I told my new manager on my first day of training that I needed to talk to him and proceeded to ask him if he'd heard of irritable bowel disease and he said yes... and I said.. I have it, but I'm on medications that seem to be helping, but I still need to go to my doc cuz I need to try something new. I just thought you should know so that if I have to run to the bathroom you know why and you don't think I'm being rude or tryin to not do my job. I told him I'm still going to give him my 100% and everything. Later that day he was standing outside the glass door with the store manager and his assis manager and they looked at me... and all of them looked worried and all I could think is GOD I hope they don't think I'm gonna be a problem.. I hope I didn't just **** up.
Posted 9/9/2008 3:31 AM (GMT 0)
it tough to know what to do or say isnt it ?
My friend just called with all this info on enxymes i not sure if they are ok to take or not have any of you tryed them?
Posted 9/9/2008 3:58 AM (GMT 0)
Most people understand that ulcers are open sores in someone's stomach, so I just tell them it's like having ulcers in my colon (or large intestine) that don't heal very well.  Fiber you eat in food is different from the fiber in metamucil or another fiber supplement.  Fiber in food, when you're in a flare, will more likely irritate your colon.  Imagine it scraping along an open sore. 

As far as food goes, it's trial and error and really individual, and you're still figuring out what you can and can't eat.  For the Quizno's sub, did it have lettuce? 

When I was in the worst part of my flare, I couldn't even eat chicken and rice soup and bananas, so it also depends on how sick your colon is.  I think most people who care about you will eventually learn to be patient and that you're learning about this disease, too.  We all are. 

BTW, mom, remember when you asked if people could see indents of teeth on their tongues?  I think the next day I looked and sure enough, I had teeth marks.  I've been having trouble with mouth and tongue sores lately, though. 

 

Posted 9/9/2008 5:03 AM (GMT 0)
mom4321 :)

You said a while back you were taking fibre (supplements?) and it helped your D, did you stop taking them? My GI insisted I take them daily and indefinitely (the rest of my life)...since taking them daily I easily tolerate eating fibreous foods, all fruits, veggies, nuts, ect with no gas or bloating...you may want to start up on your fibre supplements and continue with them (flaring or not).

As far as explaining things, it's kinda tough when you don't understand it yourself so the best thing to do is say there really is no rhyme or reasoning when it comes to IBD, it's the nature of the beast and it often has a mind of it's own.

BTW, it could very well have been the processed meat from the sub that bothered you, researchers know that fast-foods, processed foods/beverages, animal fats, caffeine can all exacerbate IBD symptoms...maybe even what you drank with your meal if it wasn't water, but instead pop, coffee, sugar fruit beverage could have also impacted how lousy you felt, remember, it's not always what you eat but what you drink as well that can be a culprit.

:)
Posted 9/9/2008 2:31 PM (GMT 0)
I agree with pb4 about beverages causing problems for people with IBD. Avoiding carbonated drinks & caffeine make a big improvement to my digestion. RE mouth sores: they can be a sign of Crohn's disease. Mouth irritation can also result from grinding one's teeth during sleep; my dentist told me that it's common for people with digestive disorders to do that while asleep! To get help with explanations of UC for relatives/friends take a look at ccfa.org Website and Salix Pharmaceuticals IBD patient newsletters online. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

Posted 9/9/2008 8:49 PM (GMT 0)
I have not been taking fiber anymore as I thought it might be bad since i read high fiber foods are a problem. So you are saying if I take fiber supplements I will also be better able to eat high fiber foods? How is this ?

As for yesterday.......The sandwich did have some lettuce on it.
Posted 9/9/2008 8:59 PM (GMT 0)

Old Hat said...
I agree with pb4 about beverages causing problems for people with IBD. Avoiding carbonated drinks & caffeine make a big improvement to my digestion. RE mouth sores: they can be a sign of Crohn's disease. Mouth irritation can also result from grinding one's teeth during sleep; my dentist told me that it's common for people with digestive disorders to do that while asleep! To get help with explanations of UC for relatives/friends take a look at ccfa.org Website and Salix Pharmaceuticals IBD patient newsletters online. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])


I get mouth sores ALL the time, and I have UC (at least the four or five doctors who have checked all say I do).. Usually when I'm flaring I have at least two at all times; when one heals another pops up. Luckily I just have one tiny one right now.
I definitely do grind my teeth at night, I catch myself doing it sometimes when I'm waking up from a deep sleep too. It's really annoying and I'm sure is the cause of my TMJ.


Anyway, as for the original question...
Usually I end up telling people about my UC after I have a scope or something done because everyone always wants to know what it was for, and I don't have much of a problem telling them once the subject is breeched. I usually just say "Well, do you know what ulcerative colitis is?" and most of the time they say no and I just say that I have it and basically I have a bunch of ulcers and inflammation in my large intestine and leave it at that. Most people don't ask too many questions or details. When they do, just try to be honest and straightforward with what you feel comfortable with, and if you're not sure, tell them you're still learning yourself and I'm sure they'll understand and drop it.

Posted 9/9/2008 9:43 PM (GMT 0)

mom4321 said...
I have not been taking fiber anymore as I thought it might be bad since i read high fiber foods are a problem. So you are saying if I take fiber supplements I will also be better able to eat high fiber foods? How is this ?

As for yesterday.......The sandwich did have some lettuce on it.

That's how it works for me, first I started with the fibre supplements, then once my system adjusted to them (for me it took 3 months) then I started adding fibreous foods back into my diet with no problems and I continue taking the fibre supplements (1 pill/day) as well, it's been almost 5 yrs of doing this with success.

Your body adjusts to the supplements therefore making it easier for your system to accept fibreous foods...that's how it works for me at least.

:)

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