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Colitis spreading??

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Ulcerative Colitis
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Posted 3/21/2009 2:06 PM (GMT 0)
Has anyone with left-sided UC or any kind of UC for that matter been able to keep it from spreading?? I know the disease usually works it's way through the colon... I see that Old Hat has had it for 30 years. I am just wondering if it is really like my doc says.... "if you do exactly what we tell you, you will live a normal life with UC"... I am wondering if taking the medicines and treating the flares will keep it from spreading. I know this is a very vague question and it probably depends on the person but I'm so afraid of doing the right thing that it keeps me stressed out all the time.

Has anyone who has had UC for a long period of time been able to keep theirs from spreading throughout their colon??

Has anyone done exactly what the docs say and has had it progress quickly through the colon?

Posted 3/21/2009 2:32 PM (GMT 0)

shortstuff... I have not had UC a long time - little over a year but would like to tell you my experience.

May, 2008 I was having the UC symptoms - bleeding, cramping, etc. so I went for a colonoscopy and diagnosed with left-sided UC - report says about 30 cm. up the sigmoid left side but mostly proctitis.  So, between then and November I used about every mesalamine medications including Colozal, Lialda, enemas, etc. - had to stop each one after short time because of side effects - not worse UC but flu-like symptoms and doctor and I discussed the fact that I could not take ASA's (mesalamines) at all.  So, went to just Proctofoam for a while and bleeding got worse so doctor wanted another colonoscopy in November.  It showed in those months that the UC had shrunk to mostly rectal area and I was doing good.  BUT - then what medication can I use.  Tried steroid enemas, etc. but no pills until Feb. when doctor said - I have to go look again and did a sigmoid (that is just first few feet up.  AND - the UC had gone back up my left side.

So - I am on prednisone and 6MP.  Apparently, although I could not continue the medication it was doing its job and I understand UC starts in the rectum and moves up the colon. 

Just my experience.  Sure wish I could have continued with a mesalamine because I believe I would be in full remission without taking prednisone.

ElaineNY

Posted 3/21/2009 3:43 PM (GMT 0)
No one can gaurantee you a normal life with UC. It's just not that predictable. Anyone telling you otherwise is blowing smoke. Ask if there's a money back gaurantee, lol! Put it in writing?
Posted 3/21/2009 3:50 PM (GMT 0)

Dr-A ... so right you are!  I relate it as like a diabetic, epileptic, etc. where you can somewhat control the condition but you have to learn to live with symptoms, etc.  However, there are so many people "living" full lives with UC and much worse.  My husband, as you may know, has Stage 4 lung cancer and has lived 2 years now with it.  They strunk it with radiation and chemo but it is still there ready to spread any time  - any day.  He NEVER lets it show or get him down.  He takes advantage of good days and lays low on bad days.  I know he is 73 but this could apply to any age.  He is a great example to all of us.  Fifteen years ago I had corneal transplants.  Without them I could be legally blind.  I have to wear contacts that sometimes drive me nuts but I do "live" with them and thankful I can see. 

I truly feel bad for the children who have to face this disease and you younger people, college students, etc. - hang in there - face it head on - don't let anyone stop you from finding what works for you to have as "normal" a life as possible.  Have you seen on Discover channel the woman who was born with NO lower body - you could be her!

ElaineNY

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