Colitis spreading??

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

shortstuff1
Regular Member


Date Joined Feb 2009
Total Posts : 80
   Posted 3/21/2009 8:06 AM (GMT -6)   
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?
29 yr old recently diagnosed with UC in Nov 08. Taking Asacol 3 times daily and Steriod enemas 2 times daily. no children, very active;


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 3/21/2009 8:32 AM (GMT -6)   

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


 
Senior - New diagnosed with proctosigmoiditis - 6/2008  Cannot tolerate mesalamines, Canasa, etc. Tried, Colozal, steroid enemas, etc. - started working but severe side effects occurred.
Started on prednisone Feb.7, 2009 - tapering to 20 mg. for two more weeks and then down to 15 mg.etc.  Added 6-MP Feb. 28.
Added Anusol suppositories - March 16 - see doc in 3 months. 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2105
   Posted 3/21/2009 9:43 AM (GMT -6)   
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?
Proctitis DX 1999, Pancolitis DX 2008
Lialda 1 day
Immuran
Golimumab study (100mg every 4 weeks)
Vitamin E Enemas as needed
Probiotis/GreenTea/VitD+Ca/SuperDHA


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 3/21/2009 9:50 AM (GMT -6)   

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


 
Senior - New diagnosed with proctosigmoiditis - 6/2008  Cannot tolerate mesalamines, Canasa, etc. Tried, Colozal, steroid enemas, etc. - started working but severe side effects occurred.
Started on prednisone Feb.7, 2009 - tapering to 20 mg. for two more weeks and then down to 15 mg.etc.  Added 6-MP Feb. 28.
Added Anusol suppositories - March 16 - see doc in 3 months. 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 

New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, June 24, 2018 7:18 AM (GMT -6)
There are a total of 2,974,692 posts in 326,201 threads.
View Active Threads


Who's Online
This forum has 161300 registered members. Please welcome our newest member, Dakotab02.
353 Guest(s), 8 Registered Member(s) are currently online.  Details
TSGlassman, twingirl812, PAPUN, Ljm2014, Uniform Charlie, OriolCarol, P34, straydog