New Question - Life Expectancy and My Story

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

Colitis Confusion
New Member


Date Joined Jan 2009
Total Posts : 17
   Posted 1/1/2009 7:33 PM (GMT -6)   
Hey all,

Newbie here, great web site and I have just surfed through the first four pages with lots of valuable information that I am only beginning to digest.

I've got a few questions, then will share my personal story, not unlike a lot of your own.....

1) What is the life expectancy for someone with UC (specifically pancolitis)?

2) What is the life expectancy for someone who chooses the J-pouch surgery?

3) What happens as you age with UC? I.e. harder to fight off infections at 75, harder to fight flares at 75, will I live to 75 because of UC, etc......

4) Does anyone worry about the side effects of imuran or remicade versus the possible good news of remission?

I was diagnosed in early March with moderate to severe pancolitis. Started with six asacol / day, soon up to 12, along with 40 mg of prednisone. I was diagnosed via a colonoscopy after 4 weeks of 6-8 bowel movements per day full of blood and mucus. GI doctor told me diet didn't play a big role and to eat whatever you can tolerate. Well the prednisone worked well and actually got off in August for 1.5 months.

In mid September, I had a slight flare in which GI doc went to 20 mg of prednisone again. Worked immediately. Got off again 2 weeks before Christmas. Now all of a sudden it feels like I just got UC for the first time again. I started having three to four bloody bowels / day and my right side hurts constantly. Only relief is during sleep. Doctor once again went to 20 mg of prednisone and 50 mg of imuran. Symptoms have not changed much, side still hurts but am down to 1 bloody, mucus, diarrhea bowl movement per day.

Doctor sent me in this week for a small intestine barium test to rule out Chron's, which thankfully came back negative. He upped me to 40 mg of predniszone and 100 mg of imuran (blood tests came back o.k. - except elevated white cells due to inflammation per GI doctor). Of course pooping barium and blood is a hard way to gauge any current effect this week. I still have side pain and also really foul gas, which I know is a bad sign.

GI doctor thinks I went from being steroid dependent to possibly being steroid resistant. He upped me to 40 mg to give the imuran time to kick in, however he said if I don't get better in the next week or so, he'd want me to go straight to remicade, which scares the heck out of me! He said I can choose to skip the remicade, but then it would basically be operating table. This has all happened way too fast for me. I'm scared and have no idea what to do.

Do you all think the prednisone is working right now? I am still pooping pretty much diarrhea and blood, but only one time a day. My side is not getting better, nor is the gas. What are the rules of thumb on bleeding, flare ups, and how long to wait? The imuran is making me extremely nauseas and I have vomited twice in the two weeks I've been on it. But the thing is after reading some of your own flares and stories, I'm not even that bad all things considered with only one bloody bowel per day.

The reason for my life expectancy questions are that I have two beautiful kids (5 and 2) and a lovely, supportive wife. I want to enjoy being a grandparent and growing old with my wife and also have a good quality of life. However, at 31, things just seem like they have progressed so fast and there is no end in sight. Like I said, not really looking for sympathy, but just wondering if you have any suggestions, opinions, etc on my situation.

Also, my grandpa's brother died from ulcerative colitis at the age of 33 and that is really weighing on my mind. However, all four of my grandparents (all in their 80's) are all healthy and still living. I just don't know about how soon to think about surgery with the hereditary issues from my grandpa's brother.

Any and all help will be very valuable and I thank you. God bless you all fighting this horrible disease. Thanks to to the moderators for this site, wish I would have found it sooner : )
Asacol - 12 per day
Prednisone - could be back up to 40 mg : (
Imuran - 100 mg
Omega 3 - 1 per day

Post Edited (Colitis Confusion) : 1/1/2009 6:40:07 PM (GMT-7)


lemonhead
Veteran Member


Date Joined Dec 2007
Total Posts : 1006
   Posted 1/1/2009 7:48 PM (GMT -6)   
I am 36 and have had uc for almost 20 years.  You can expect to live a long, happy, productive life with proper treatment.  As far as I know, j-pouch surgery cures UC.  As you get older you will become more aware of your body and all the things that trigger your flares.  So, will it get easier.....don't know, but you will get better at handeling it.  I am sure someone else on here will give you more information, but welcome and good luck.

diagnosed with left-sided UC in 1997. (45cm)
Currently on 10mg Prednisone
12 caps of colazal    9 caps Colazal
2  1 rowasa enemas nightly
35, female


unclebubba
Veteran Member


Date Joined Dec 2008
Total Posts : 510
   Posted 1/1/2009 7:58 PM (GMT -6)   
My GI also said eat what you can tolerate... but I have found that my diet really does effect this disease. DOc has had me on meds, but I real relief from symptoms have come through diet changes. Went gluten free almost 30 days ago and that reduced syptoms in half. Started spinach/sumflower diet about 10 days ago ( meshes well with gluten free ) and that is takin me the rest of the way. I now normally have 2-3 Bm's a day but only in mornings. rest of day is good with little to no cramping or bloating. Still get some urgency in afternoon but.... nothing. This is far better than the 15+ times of running to the throne. As for life expectancy I can;t answer. AM still coming out of my first flare. But I am encouraged by how long the people on here have successfully battled this. SOme of them for twenty plus years. and still going strong. I wouldn;t worry about that. And Most of the people on here that have had the J-pouch thing have talked real strongly about how it has helped them. Personally I'm no where near ready to opt for that yet, but if and or when it becomes needed, then I am okay with it because of all the positive feedback from people on here.
Be strong... work on your diet... and stress play a big factor in this battle... Quit stressing yourself out about dying and leaving your kids. You'll be around for a long time. Just keep fightin.
 
38 yr old male, NE Ohio
 
diagnosed in aug 2008
30 mg predisone, 9 balsalazide, rowesa enema, 2 gemfibrozil, 1 norvasc, 1 metoprotol, 1 allopurinol, 2 probiotic, 2 aloe vera
gluten intolerance... attempting to live no/low gluten
 
**********
update: down to 25 mg pred a day as of 12/25/08


Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 1848
   Posted 1/1/2009 8:40 PM (GMT -6)   
I'll be around till 120 or so.
Proctitis DX 1999, Pancolitis DX 2008
Lialda 1 day
Immuran
Golimumab study
Vitamin E Enemas as needed
Probiotis/GreenTea/VitD+Ca/SuperDHA


Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 550
   Posted 1/1/2009 9:44 PM (GMT -6)   

I don't believe UC is a cause of death. I think your grandpa's brother didn't die from UC, he may have died from a complication. Also remember that he was 33 about 50 years ago and medical technology has come a very long way. No cure yet for UC but lots of available testing to find complications (blockages, perforations, etc) in time.

My daughter had her surgery this past summer at 17 years old. She was steroid dependent, the meds were not keeping her in remission, and she didn't want to live the next 60+ years always trying to stay one step ahead of UC.

Her GI also said diet wasn't the cause of UC. However there were (and are) some things that bother her more. She chooses to stay away from them (or not) knowing how they affect her.

You are right, this is a wonderful site. The support here is phenomenal.


--Mom of bratcat (17 years old) and nonamejames (19 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Flared Fall 2006, Fall 2007, Spring 2008
Asacol, Rowasa, hydrocortisone enemas, prednisone, 6-mp, Remicade
7/3/08-Step 1 j-pouch surgery and no more meds!
11/10/08-Step 2 reconnect!
 
Son nonamejames was diagnosed with Crohns in Spring 2008
Asacol, Pentasa, 6-mp


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2831
   Posted 1/2/2009 3:31 PM (GMT -6)   
lemonhead said...
I am 36 and have had uc for almost 20 years.  You can expect to live a long, happy, productive life with proper treatment.  As far as I know, j-pouch surgery cures UC.  As you get older you will become more aware of your body and all the things that trigger your flares.  So, will it get easier.....don't know, but you will get better at handeling it.  I am sure someone else on here will give you more information, but welcome and good luck.

Ditto here, 24 years. Everyone is different, but while UC might not shorten your life it will make it harder. I would say if you find you are not getting quality remissions and it interferes with your life a lot because you like to be out with your kids, etc., consider the surgery instead of years of having to manage it and suffering discomfort and anxiety.

49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Replete$$ probiotic powder at first, now Forte pills. Doing much better, but still having some bad days. 


ElizaLily
Regular Member


Date Joined Dec 2008
Total Posts : 34
   Posted 1/2/2009 4:17 PM (GMT -6)   
Hi Colitis Confusion,

I agree with what Bennie said, I don't think cause of death was colitis, but if so, it's very rare and with the meds and treatments of today, you should be fine. I have 2 beautiful kids too and hope to live till I'm 120 like Dr. A! Make sure you're seeing a good GI and do research through sites like these for what others are doing- (ie. spinach/sunflower diet). I'm fairly new to this site and it's just terrific! Good luck!

Eliza
43 years old female
Left sided UC for 25 years
Remission with 6MP for the last 6 years - until now.
Flaring for several months - worst flare ever.
Meds:
4 Salofalk/day
6MP 4x a week
Currently trying the sunflower/spinach diet (thanks, cfromutah!)
 


mbx5
Regular Member


Date Joined Sep 2007
Total Posts : 365
   Posted 1/2/2009 6:17 PM (GMT -6)   
14 long years here.... I think about that a lot - life expectancy, cancer, surgery, etc... This site is great for the support and positive thoughts... I have a great wife and a baby on the way - so I do think about what kind of father I will be due to my UC...not being able to do certain things, etc... I think that quality of life is compromised but maybe if we are lucky and kept treated life expectancy can be somewhat normal...
34 yr old male. UC for 14 years. Started left-sided, most recent scope shows pancolitis. 40mg pred (as of 12/16/08), 12 pills Asacol per day, 1mg Atavan per day (anxiety) when needed, Fish oil pills, Culturelle probiotics, Multivitamin. Recent Endonasal brain surgery to remove non-cancerous hormone producing tumor on pituitary gland (and I am still more afraid of my UC!!) "I poop in the woods because I can"


Colitis Confusion
New Member


Date Joined Jan 2009
Total Posts : 17
   Posted 1/5/2009 9:36 AM (GMT -6)   
Thanks to all for the wonderful support and advice. I really appreciate it! Still flaring terribly at 40 mg prednisone, but hopefully soon it will turn around for me. I have started eating spinach thanks to the uncle bubba suggestion - never been a fan, but if it works, I'll do it!

Thanks again.
Asacol - 12 per day
Prednisone - could be back up to 40 mg : (
Imuran - 100 mg
Omega 3 - 1 per day

New Topic Post Reply Printable Version
Forum Information
Currently it is Thursday, April 24, 2014 6:05 PM (GMT -6)
There are a total of 2,110,353 posts in 234,555 threads.
View Active Threads


Who's Online
This forum has 149199 registered members. Please welcome our newest member, Penryk.
477 Guest(s), 29 Registered Member(s) are currently online.  Details
hld4good, clocknut, hateuc, spottydog10, Paddicake77, Chotti, Jerry L., Dale B, Gretchen1, robertC, brt4545, gedman, Guardian9, I got uc, titlewave, Mercy&Grace, Redwing57, jse, DYank, JJ-3, CarlG, colitis32, khaiz1202, khatia, Roseym10, churey360, F8, UCwhat?, gingeranne8


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest  Follow HealingWell.com on YouTube
Advertisement
Advertisement

©1996-2014 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer