HealingWell
Search Close Search
☰

a little help here please

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 10/9/2007 9:19 PM (GMT 0)
so i just saw my g.i and was informed for the first time in 2 years that i in fact do not have ulcerative colitis but chron's colitis. I am very frustrated to say the least as i have been trying to deal with ulcerative colitis for the past 2 years, and now knowing that it is chron's colitis makes things much different i would assume. Does anybody know where i can find info on "chron's colitis".
Posted 10/9/2007 9:32 PM (GMT 0)
Hi...it's good you have a definitive diagnosis. Because it's in the colon, many of the meds used for UC are used for Crohn's colitis.

pb4 has crohn's colitis and frequents this board as well as the Crohn's board. She'll be a good resource for you.

The Crohn's board will be one where you'll learn about CD, meds, other treatments, etc.

Keep us posted as to how you're doing. What meds has the doc suggested for you?

quincy
Posted 10/9/2007 9:38 PM (GMT 0)
My doc suggested I get back on the salofalk. I was on it before but I went into a flare and didn't think that it had done much for me. I struggle with the fact that i have to take pills everyday for the rest of my life that is why I have been not taking any meds except for the occassional course of prednisone to settle a flare whenever need be. It would be nice if there was a pill i could take once in the morning and not have to worry again about it till the next morning. I know there is lialda but my doc doesnt think its availabe in Canada. So pretty much I think im just going to have to start taking the salofalk again and see how that goes. This is all very depressing. I at least had some comfort in knowing that i could one day have surgery and be "cured" if it came to it, but now with chrons colitis i'll pretty much just have to deal with it for my whole life.
Posted 10/9/2007 9:42 PM (GMT 0)
kickboxer :)

The same meds used for UC are used for crohns-colitis, I know it's upsetting to get your DX changed, especially from UC to CD, because of the simple fact that CD is more to deal with in regards to the fact that it can affect the entire GI tract from the mouth to the anus whereas UC is basically limited to the colon (sometimes involving the rectom)...but be assured that one can have mild CD and sorta be better off then one with severe UC, when it comes to IBD those are the facts, it's all about the degree of severity in relation to symptoms, yes, there are more complications with crohns compared to UC in terms of fisutlas, abcesses, perianal crohns skin tags, but not every CD suffers with all of those aspects either.

So relax and keep doing what your doing in regards to the fibre and the probiotics, those are 2 good steps in the right direction.

If you google crohns-colitis you'll learn of info that way as well.

Eat right, exercise regularly if you can and keep on with the probiotics and fibre (the only time you should resort to a low-fibre diet is if you experiance strictures/blockages.


:)
Posted 10/9/2007 9:43 PM (GMT 0)

I have to ask, just what is Crohn's colitis..........?

My husband has Crohn's and this is my definition of Crohn's:

Crohn’s disease is an inflammatory bowel disease, the general name for diseases that cause swelling in the intestines. Because the symptoms of Crohn’s disease are similar to other intestinal disorders, such as irritable bowel syndrome and ulcerative colitis, it can be difficult to diagnose. Ulcerative colitis causes inflammation and ulcers in the top layer of the lining of the large intestine. In Crohn’s disease, all layers of the intestine may be involved, and normal healthy bowel can be found between sections of diseased bowel.

Colitis (also called ulcerative colitis) is an acute or chronic inflammation of the membrane lining the colon—your large intestine or bowel. Colitis causes inflammation and sores, called ulcers, in the top layers of the lining of the large intestine. Ulcerative colitis rarely affects the small intestine except for the lower section, called the ileum.

So am I right in thinking Kickboxer has been diagnosised with Crohn's?

Thank you kindly for any clairfication and I wish you the best Kickboxer. 

Posted 10/9/2007 9:48 PM (GMT 0)
Did your doctor explain why the diagnosis changed? I'm wondering whether your doctor missed something whether there's a really good explanation why someone could misdiagnose you for two years.

If I were you, I would do some research and find another doctor for a second opinion. Get copies of all your medical records to take with you and see what the other doctor recommends for treatment.

For more info, you can also check out the Crohn's and Colitis Foundation website:
www.ccfa.org
Posted 10/9/2007 9:54 PM (GMT 0)
stkitt :)

Crohns-colitis is simply the term used to describe crohns affecting the colon, where UC typically hangs out....

proctitis is inflammation by either CD or UC in the rectom, ileitis is inflammation of the ileum.

With UC the small intestines are NEVER affected, only with crohns, UC is limited to the colon and sometimes involves the rectom.

One of the major differences between the inflammation with UC compared to the inflammation with CD is with CD the inflammation can go beneith the many layers of the intestinal tissues and there are skipped patterns of inflammation, with UC the inflammation is surfacable and the main reason why UCers don't get fistulas, also the entire area will be inflammed instead of skipped patterns like with crohns.

That said, kickboxer you can always discuss this with your doc in regards to what changed your DX.

:)
Posted 10/9/2007 10:11 PM (GMT 0)
Thanks for the quick replies everybody. I really appreciate it.

Ok first of all exercise is not an issue whatsoever. I am active in the sport of kickboxing(i actually have a fight on sunday, whish me luck lol) which means im training about 12-15hrs a week. Running about 30-40km a week on top of that as well as doing some weight training. But i do notice low energy levels somedays but i just push through it.

Im not sure if it was a Dx change, i think more a miscommunication, i never realy received a clear diagnoses and its my fault for not following up but i've onyl had this for 2 years so i guess im still pretty knew to it all.. I should have asked more questions from the get go.

So from my understanding it is "chron's-colitis" because only affects my large intestine, at the moment at least. But my doctor informed me that it could at any point spread further up my digestive tract.

And I like to think my case is mild. Although i dont really have anything to compare it to. I mean for most of the time i feel pretty normal, then a flare sets in and i go on a course of prednisone, it goes away, and the cycle continues. I've had now 4 flares in the past 2 years. The first two were definitely more severe.

I want to get a second opinion, i guess i'll start looking for a new g.i.. Im guessin seeing a new g.i will mean another colonoscopy??

Again thank you all for taking the time to answer my questions. As if dealing with your own issues wasnt enough eh, you're all helping me wiht mine. And i'll be glad to lend my hand in your direction if the need be. thanks
Posted 10/9/2007 10:15 PM (GMT 0)

kickboxer said...

So from my understanding it is "chron's-colitis" because only affects my large intestine, at the moment at least. But my doctor informed me that it could at any point spread further up my digestive tract.

Yes :)  Hopefully you can keep it mild by continuing with the probiotics (VSL3 is a top probiotic) and the fibre supplements and I'm assuming you are a healthy eater avoiding processed foods/beverages, fast foods and refined sugar in your diet.

And good luck with your fight!!!!

Posted 10/9/2007 10:17 PM (GMT 0)
kickboxer,

You can just ask for a copy of your colonoscopy report from your doctor, (You have a right to it, so it's not strange to ask for it.) A second colonoscopy with a new doctor should not be necessary so don't let someone talk you into it unless they have a really good reason.
Posted 10/9/2007 10:22 PM (GMT 0)
Yeah I eat very well.. Lots of fruits and veggies, more fruit tho cause they just taste better. No fast food ever, The only junk food i cant seem to shake is chips. And i try to have those in moderation. I drink a little bit, maybe once or twice a month. And i try to only drink vodka with cranberry(organic cranberry so no added sugar) , sometimes i'll have a few beers. Prior to being DX my diet was horrible. No fruits or veggies, tons of candy and junk. And in highschool i abused drugs, chemical. I would not even think of coming close to those anymore. To be honest i think it was this lifestyle that gave me this darn dissease, but at the same time i dont have any regrets because if i hadnt experienced all that i had to this point i wouldnt be the person i am today, which i am very proud of, minus the chrons-colitis of course.

thanks pb4, i'll let you know how it went!
Posted 10/9/2007 10:35 PM (GMT 0)
Sounds good kickboxer, personally as a female I love watching stuff like that, UFC and such glues me to the tube!!! I have my own bag that I use as part of my work-out routine along with weights, it's an excellent cardio work-out...and I'm glad you no longer use, no one knows for sure what all triggers IBD but never blame yourself since science has proven that a huge factor of getting it is genetics.

:)
Posted 10/10/2007 3:08 AM (GMT 0)
I am surprised to hear that you are a female and love fight sports. Most girls i know are interested that i fight but thats as far as it goes, if i put some on the t.v they're like can you change this please. Not only is a punching bag a great cardio workout but i find its an awesome stress reliever.

By the way your smiley faces in your posts go a long way. :)

I have a question for you, how long have you been battling chron's-colitis? I've only had it for 2 years now, im starting to come to terms with it i guess
Posted 10/10/2007 3:30 AM (GMT 0)
Oh I love fighting matches more then any other sports that's for sure!!!! Okay, the exception is watching my son play baseball...

True about the bag being a great stress reliever, that's another reason why I get so much out of it.

If I didn't have smilies I'd probably be crying instead so on with the smiley's :) and I'd rather spread the joy than the sorrow.

I've had crohns-colitis continuously for my entire 16.5yrs of having crohns...when I first got sick it was affecting my small bowel, colon, rectom and perianal crohns skin tags...it was in all those locations at one time for 2ish years, but has come and gone in the rectom (proctitis) over all my yrs, but unfortunately stayed constant to some degree in the colon and the anus with the skin tags. I still havn't come to terms with it myself, but it's different for everyone, for the most part I deal with it but I'll admit I struggle with it many times too.

I was in my early 20's when I first got sick, I'm 40 now but I'll tell you one thing for sure, I don't know if I would be so into the exercising if it wasn't for this DD...so I guess there's at least one positive thing come out of it, and of course support boards like here at HW, it's very good therapy to help others who are also struggling.

:)
Posted 10/10/2007 5:08 AM (GMT 0)

Hey Kickboxer,

Glad to hear you are into exercise as that alone does so much for the attitude and makes you feel good about who you are.  I am a fitness instructor at the YMCA, no it is not Gold's Gym but I just started this job and people have a good time.  :)  :)

I wish you the best in your match, and I am into smilies too........just hang out in a different forum most of the time. Hoping the best for you.

J J      J     J     J      J

 

Posted 10/10/2007 10:48 AM (GMT 0)
Yeah as much as it sucks to have this dissease I don't necessarily think of it as too bad a thing, as long as it stays the way it is. I mean since i've been diagnosed i've totally changed around my lifestyle and eating habits for the better.. I've started to focus more on school because im spending more time at home and i've gotten closer with my family which is awesome( i was once the black sheep of the family lol).. And what helps me deal with this is that anytime i complain to myself i just think, hey there is a kid somewhere around the world right now in some country who is probably sitting huddled up in a corner of a clay hut starving with no family, so what right do i have to complain about my troubles which pale in comparison to many. also this forum has helped tremendously tolift my spirits, before finding it i felt like i was alone with this, even when your family tries to comfort you its hard because you cant help but think "you guys have no idea whats its like" so as much as they try it doesn't get as far as comfort from yous guys because we are all pretty much in the same boat.

I'll try to get my fight on tape so maybe i can post it on the net somehow, give you something to watch pb4.. I know there wont be another UFC on for a few weeks lol, i believe..
Posted 10/10/2007 10:48 AM (GMT 0)
Oops sorry, I forgot something... :) , thats better
Posted 10/10/2007 5:15 PM (GMT 0)
LOL! Cool!!!

:)
Posted 10/10/2007 6:23 PM (GMT 0)
Another kickboxing fan here, although I'm into it more as a kick ass cardio workout than any formal fighting competition.

You may want to ask about having the IBD Serology 7 battery of lab tests run just to make sure of your diagnosis. Mine was also recently in question and I've had the UC diagnosis since 1999. My doc says it's not unusual for IBDers to have their diagnosis switched in the first seven years of treatment. He also said new research is leading them to believe UC and Crohn's are not as separate as they once thought and there may be some overlap.

In particular, I've always experienced pain and discomfort on the right ascending side of my colon and a recent CT showed a thickened bowel wall in that area, yet the c-scope revealed inflammation on the left side and nothing going on on the right. Go figure.

Anyhow, the IBD Serology 7 test is supposed to be very accurate in giving a Crohn's vs. UC designation. You can download a brochure here:

http://www.prometheuspatients.com/PDF/PRM16038_DX_IBD_S7_client.pdf
Posted 10/10/2007 8:05 PM (GMT 0)
Thank you very much princesa.I just want to ask, is that blood test something i should request for with my g.i or my normal doctor? I don't have an appointment with the g.i for another 6 months. Maybe i can get the test done with a requisition from my normal doctor and then have the results sent to my g.i for analysis??? Thanks again for the info.
Posted 10/10/2007 8:10 PM (GMT 0)
Oh i forgot one thing, Is that test available in Canada?? I looked a tthe brochure and it said the lab is in CA.
Posted 10/10/2007 10:40 PM (GMT 0)
I would think a gastro doc would be more likely to authorize it. I'm not sure a GP would even be familiar with it... I gather it's fairly cutting edge. Also, I don't know about the availability in Canada. You could use the contact info from Prometheus Labs' site and inquire. Check on your insurance coverage, too, because it may or may not be covered. Sure beats another c-scope, though!
✚ New Topic ✚ Reply