Anyone have an ostomy after the age of 60? Need advice

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Christine1946
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Date Joined Aug 2008
Total Posts : 5915
   Posted 3/9/2010 8:47 AM (GMT -6)   
     I have had UC for over 11 years.  Right now I am totally disgusted.  All the drugs are failing me and I am prednisone dependent.  Not happy about that as it has given me osteoporosis, high blood pressure and increased my blood glucose level.
     My GI doctor is considering an increase in the Remicade dose, as he has me on half the max dose at the time.  He mentioned that if it fails, there is Humira.  Frankly, I have had it. 
     The main problem is my rectum.  I may have one good day and then the next..urgency, multiple bowel movements and bleeding.  Tired of having my life on hold for the last two years.
     My main concern is age.  I am presently 63 1/2 yrs old.  My blood pressure is controlled through medication, benicar 20 mgm.  Other than the UP I am in good health.  I do have situs inversus (all my organs are reversed) but that shouldn't have any major impact.
 
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008 for ten days.
Remission Nov 08 thru May of 09.
Flare May of 09 thru Aug of 09.  Very short remission.  Flared again Nov 1st.  Started Remicade Nov 18th.  Felt great after first two infusions.  Suffered a set back after 3rd infusion on Dec 31st.  Meds: Benicar, Colazal, Prednisone (hopefully short course), Calcium with D, multivitamin, probiotic.  Rectal meds..Proctofoam, cort suppositories....cannot retain the enemas.


summerstorm
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Date Joined Aug 2006
Total Posts : 6571
   Posted 3/9/2010 11:30 AM (GMT -6)   
well i dont know about the situs inversus, i had never heard of that in real life! that sounds scary though!

however, i dont think that the surgery will be a big deal, you are far from old,lol.
My grandma had part of her colon removed due to colon cancer at 78 (i think) then her hip replaced at 80, my great aunt had her knee replaced at 80, evil grandma had her knees replaced at 78, so surgery on older people is not a big deal! As for the blood pressure, as long as they keep up with your meds in surgery i wouldnt worry about it.
now one thing i will mention and this may not be true for everyone, a friends stepfather, he is probably about 60, had surgery and after he had surgery he had to change his blood pressure medicine, the old one wasnt working anymore, but he had a heart valve replcacement, so that may have been a factor.
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-


80sChick
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Date Joined Oct 2009
Total Posts : 1054
   Posted 3/9/2010 1:08 PM (GMT -6)   
I don't have any experience in this as I am 28, but I would agree with summerstorm. 63 is far from old, especially when you consider living the next 20 years the way you're living now! Talk with your dr--is he/she willing to do the surgery? I am sure there are plenty of people who have had this done around your age, especially since things like colon cancer seem to crop up as we age.
28 Year old Female
Diagnosed with Crohn's Colitis March 2000
Recent possible diagnosis of IBS-D
 
Tried Meds: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas.
 
Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently on: 30mg Prednisone (Tapering SLOWLY from 40), Psyllium Seed Powder, Prenatal Vitamin, Vitamin B 12 Complex, Vitamin D/Calcium, Vesicare (for urinary retention). 


Allison77
Regular Member


Date Joined Feb 2005
Total Posts : 421
   Posted 3/9/2010 1:13 PM (GMT -6)   
Summerstorm- "evil grandma"? explain.....LOL

-Allie
www.oscartheostomy.blogspot.com
-Allison
RX Crohn's 1999, over 30 surgeries, 3 strokes, permanent colostomy and rectum removal.
 
"The most unfortunate thing that happens to a person who fears failure is that he limits himself by becoming afraid to try anything new."


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/9/2010 3:26 PM (GMT -6)   
lol its my husbands mother mother, and that woman is pure evil, just all there is to say about her.
i am lutheran,she told my husband it was good that we were getting married in my church, cause i wasnt fit to set foot in a catholic church, she called me fat at my wedding shower, she wouldnt come see my sil's kids when they were born, cause it was too far away, but that same day she drove 2 hours away to see these random people, sil was about 20 minutes away.
And thats just the little stuff, there is sooo much more! And soooo much worse! I didnt even realize i had written evil grandma, thats just how we refer to her, and it came out! Even her daughter refers to her that way!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-


Allison77
Regular Member


Date Joined Feb 2005
Total Posts : 421
   Posted 3/9/2010 4:50 PM (GMT -6)   
That's horrible, horribly funny that is!! Isn't it weird how there is always one in every family?

-Allie
www.oscartheostomy.blogspot.com
-Allison
RX Crohn's 1999, over 30 surgeries, 3 strokes, permanent colostomy and rectum removal.
 
"The most unfortunate thing that happens to a person who fears failure is that he limits himself by becoming afraid to try anything new."


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 3/9/2010 5:00 PM (GMT -6)   
Christine~I meet people of all ages, each week, who have had abdominal surgery and probably half have ileos or colostomies...I've even met a late 50's man who went for a j-pouch:)

surgery is a cure for UC....are you worried about the pain or recovery? pain is controlled and recovery is not a walk in the park but every day gets easier than the one before!!
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/9/2010 6:49 PM (GMT -6)   
Allie-her husband is just as bad, although seeing as how he just fell down the stairs and literally knocked his head off, its ok they put itback on, i hesitate to say very many bad things about him right now! :D
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-


polishdan
Veteran Member


Date Joined Mar 2010
Total Posts : 1595
   Posted 3/10/2010 9:44 PM (GMT -6)   
Christine

What is your concern about having the colectomy? The surgery or having to wear a bag? Whichever it is the colectomy is a good choice. I had mine in Nov. 2007 at 63 1/2. Getting off the UC meds might fix your other problems.

Dan

Allison77
Regular Member


Date Joined Feb 2005
Total Posts : 421
   Posted 3/10/2010 11:42 PM (GMT -6)   
Summerstorm - your awesome!! thanks for always making me grin!!! *hugs*
 
-Allie
RX Crohn's 1999, over 30 surgeries, 3 strokes, permanent colostomy and rectum removal.
 
"The most unfortunate thing that happens to a person who fears failure is that he limits himself by becoming afraid to try anything new."


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5915
   Posted 3/12/2010 6:15 PM (GMT -6)   
     Polishdan...Is that Polish like in the nationality?  I am Polish too...well half because mom was Polish and I grew up in a Polish neighborhood...yak sie macz?
 Anyway....I am not afraid of pain...God only knows I have suffered my share with this disease, ulcerative proctitis.  I suppose what scares me most is the thought of complications following the surgery.  I know with every surgical procedure there is a threat but this one seems more so.  Wearing a bag doesn't frighten me either.  Frankly, my GI doctor, even though he has mentioned the possibility of surgery, wants me to give Humira a shot.  I really do not want to leave any stone unturned.  I am debating whether to go to Thomas Jefferson Hospital or Univ of Pa Hospital both in Philadelphia.  We live in south Jersey and it is only a 15 minute drive over the bridge.  My husband is even willing to go to the Cleveland Clinic but it is so far. I would make sure to get a very experience colorectal surgeon.
 
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008 for ten days.
Remission Nov 08 thru May of 09.
Flare May of 09 thru Aug of 09.  Very short remission.  Flared again Nov 1st.  Started Remicade Nov 18th.  Felt great after first two infusions.  Suffered a set back after 3rd infusion on Dec 31st.  Meds: Benicar, Colazal, Prednisone (hopefully short course), Calcium with D, multivitamin, probiotic.  Rectal meds..Proctofoam, cort suppositories....cannot retain the enemas.


polishdan
Veteran Member


Date Joined Mar 2010
Total Posts : 1595
   Posted 3/15/2010 8:35 PM (GMT -6)   
Christine
I am only polish on my mom's side and my dad's side. All four grandparents came here from Poland. Hey, that makes me ALL polish and proud of it.

I was offered remicaid but refused. It just seemed too unproven and long term effects not totally known. I said just take it out so I can get my life back. A few days ago I read on a thread that someone had remicaid induced lupus and someone else had humara induced lupus. Wish I knew where I read it.

Sure there can be complications, but there can be further complications if you don't have it removed. I had complications after surgery, got through it and would still make the same decision. Get yor life back.

By the way, did you live in N.J in the 50's. That was the hotbed of DOOWOP. I grew up in Michigan. We had MOTOWN. thought it was good until I heard DOOWOP on T.J. Lubinsky program a few years ago. That's real music.

Dan

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5692
   Posted 3/16/2010 7:11 AM (GMT -6)   
I had surgery 9 years ago for refractive disease and I have been active on discussion boards ever since. In the 9 years I have never met a person who wishes they had UC back! I have only met one person who regrets having surgery but he is mentally unbalanced and has been banned from several boards so I'm not sure what to believe from him. Most of us who opt for surgery will say we wished we had done it sooner as life is SO MUCH BETTER without a colon!!!

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


meshice
Veteran Member


Date Joined Jan 2003
Total Posts : 734
   Posted 3/16/2010 6:09 PM (GMT -6)   
My mom had her colostomy surgery at age 64.  She had constant diarreah for three years prior which meant hardly leaving the house at all.  She had such a small rectum with problems that they couldn't even do a colonoscopy with a baby's wand.  She had no problems with surgery or the colostomy.  Her surgery was at a larger hospital in our area with great ostomy support.  She has adjust well and her life has improved 100%.  Her health is much better now.  She has strenght and stamina.  She takes 6MP as her maintance drug and vitamins.

"We can't beat this disease, YET, but we can't let it beat us!"
Mandy

"Do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." Matthew 6:34


Arundinaria
Regular Member


Date Joined Apr 2007
Total Posts : 160
   Posted 3/17/2010 8:10 PM (GMT -6)   
i had my colostomy at age 62  beats a life of pai
 
Ralph
When there are no more choices, tha decision is easy!


Hopeso
Regular Member


Date Joined Jun 2004
Total Posts : 231
   Posted 3/18/2010 9:09 AM (GMT -6)   
I was in my 50's but also had been in UC land for 12 years, and we are at risk as our colons have UC for that long. I didn't choose to have UC but I did choose to have the colon and rectum and anus removed and get back my life. I didn't want to wait and suffer one more day. I got rid of boxes of meds an now I just take immodium when I start feeling like I might get dehydrated. It is kind of freaky when you see your bag at first, but now I have had it going on 5 years and it is just part of me and I don't think of it much at all. I wear a tubetop sometimes over it if I am doing anything really active. The surgery is a bear, but now they can do it with a laparoscopy. You might be in better shape than some younger folks who have had UC and lost weight to a drastic point before their surgery. I knew I was going to die anyway if I didn't have it, and I couldn't live the way I was, so it was the only way out for me.
Leslie
Les and DB from KC(Les is a member of UC and Ostomy forum also)
DB diagnosed 11-01-07
psa high for several years from 4 to 10, but last one before surgery was 8.6
Gleason 3+3
T1c
Da Vinci on 12-14-07


Arundinaria
Regular Member


Date Joined Apr 2007
Total Posts : 160
   Posted 3/18/2010 9:47 AM (GMT -6)   
Sorry I made a typing error. I was 82 not 62

Ralph
When there are no more choices, tha decision is easy!

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