Life with a colostomy-need help for my sister

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New Member

Date Joined Apr 2009
Total Posts : 3
   Posted 4/21/2009 10:07 PM (GMT -6)   
Hi - My sister has been living with active colitis for the last five years. Started out as proctitis and the disease has progressed over the last thirty years into ulcerative colitis. She just had her first colonoscopy in FIVE years - long, sad story about being a single mom with HUGE insurance deductibles and an uninformed small town doctor.....results were she had infection, mucus, two polyps as well as some flat lesions that her doctor was obviously not very pleased about. The Dr. told her that she had sent off several biopsies, looking for dysplasia. Not sure what's going to happen, but..... wondering what anybody can tell me about life with a colostomy. Seems like it's a very strong possibility. I'd really appreciate any info you can give me, as I've promised to be her advocate on the internet (hoping to save her sanity until she gets her lab results on Friday).....trying to save her some sleepless nights! Thanks so much!
I just added a title to your post :)

Post Edited By Moderator (Red_34) : 4/22/2009 5:33:32 AM (GMT-6)

Veteran Member

Date Joined Mar 2008
Total Posts : 2855
   Posted 4/21/2009 10:29 PM (GMT -6)   
Maybe you should re-post with a subject, to catch the attention of the folks who have had surgery. You'll hear a lot of positive stories!
(You're a good sister, by the way).
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 wheat/gluten, other intolerances; eliminated wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion). 
Bad flare in March, seasonal? Back on prednisone 40mg, down to 10mg so far so good... Humira denied, started Remicade 4/12 and doing great~ 

New Member

Date Joined Apr 2009
Total Posts : 3
   Posted 4/21/2009 10:33 PM (GMT -6)   
Thanks so much Peety! Not terribly internet saavy! Still trying to figure out how to post the subject - oh well! Glad to hear you're doing well.......

Johnny K
Regular Member

Date Joined Apr 2009
Total Posts : 32
   Posted 4/21/2009 11:10 PM (GMT -6)   
don;t have a colostomy have a j pouch but my father has the permanant colostomy and you'd never know really. i had it for a month inbetween my first and second surgery and i don't know how he does it. definatly something to get use to but with how sick she sounds something that would be worth it. if possible look into the J pouch surgery and there are a few other options with surgery perhaps she could get one of those if not she'll still get along fine with a colostomy
21 Male in Michigan
Dioganosed with UC: sept 2000
J-pouch Surgery: august 2008
Feeling wonderful and hoping I can help :)

Regular Member

Date Joined Mar 2009
Total Posts : 105
   Posted 4/21/2009 11:23 PM (GMT -6)   
On healingwell there is also a separate board for ostemy patients. Good luck finding what you need.
37 y/o female
non-specific colitis dx. 2007
ulcerative colits dx. 2009
diverticular disease dx. 2009
Colazal-current, but not working yet

Regular Member

Date Joined Jan 2009
Total Posts : 498
   Posted 4/22/2009 12:21 AM (GMT -6)   
Please tell your sister not to worry too much. Infact, one of my friends had colon cancer, and was advised colostomy. After his 1st stage, I had met the doctor, and was told that they may not be able to create a J pouch. However, after about 3 months or so, the GI surgeon gave him a J pouch, and he is doing quite well. It has been over two years, he had this J pouch.

So it is not necessary that your sister will have to go for permanent colostomy. I had too had it for over 4 months between my first surgery and the second one. There are lots of people on Ostomy Board, who are really doing well with permanent colostomy for over 10 years.
45 years Male Attorney
Diagnosed UC October 1989
Had two stage J Pouch Surgery Nov 2005; Take Down March 2006
Complications after surgery - Incisional Hernia and Ano Fistulas
"There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle: Albert Einstein
"What you are aware of you are in control of; what you are not aware of is in control of you."

Forum Moderator

Date Joined Dec 2008
Total Posts : 16732
   Posted 4/22/2009 9:09 AM (GMT -6)   
Maybe she can be treated with medication? It is not always necessary to have surgery, even in a situation like hers. If the polyps are nothing and they can control the inflammation, she could live forever without having to have surgery. Not to say surgery isn't a great option but for someone with bad insurance, it would probably cost her a ton out of pocket. I hope you can find a solution that won't require her too much time away from her family. The surgery is a difficult one (I have heard) but can be well worth it.
Diagnosed with proctitis in March 2007 - Treated with Canasa 2x Daily
December 08 - Began treating with Asacol 400mg (9 a day)

Veteran Member

Date Joined Feb 2006
Total Posts : 5698
   Posted 4/22/2009 9:32 AM (GMT -6)   
Once the results from her biopsies come back I would recommend that she get a second opinion from a highly recommended GI in the closest metropolitan ciy in your state. You can find references for those GIs by posting either here or at If she has dysplasia she can get surgical options at too. She would have the choice of a permanent ileostomy, j-pouch, or k-pouch. All have pros and cons and she will need to decide what the best choice for her lifestyle. Hopefully she won't need surgery and can continue to manage her UC with medications.

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

Veteran Member

Date Joined Mar 2008
Total Posts : 1202
   Posted 4/22/2009 4:14 PM (GMT -6)   
I agree with all of the nice posters above me here. My 2 cents: Get to a bigger town for your 2nd opinion, a GI with lots of experience and ditto for the selection of a surgeon, if it comes to that. There are miles to go... and lots to read. Get to the search site here, or even try the Crohn's board for info on specifics. Good luck, Good sister, Katmom
Daughter,15 diagnosed 1-08 w/ UC .
Previous drug sampling: Asacol, Prevacid, Flagyl, Prednisone- 50mg to 0, 4 major flares '08.Hospital four x. Low residue diet,
6MP, Colazal , Cortifoam enemas,
Trying probiotics, Niferex, fish oil, Magnesium, Acupuncture.
Remicade 10mg per kilo@ 8wks, since 10-08. Still on 6mp and Colazal

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 4/22/2009 8:08 PM (GMT -6)   
Yes def a second opinion!
But i have a permanent ileo and really its not bad at all, very handy, lol. Noone knows i have it and its not nearly as gross as people think it is.
i hope all goes well for ya'll

New Member

Date Joined Apr 2009
Total Posts : 3
   Posted 4/23/2009 10:04 PM (GMT -6)   
I can't thank all of you enough for your help and willingness to share your experiences! We're both very scared and apprehensive about what her lab results will be tomorrow. I love PSA.dehli's quote about's so true that once you have the knowledge you're better prepared to deal with things. So much better than speculating and driving yourself crazy with your imagination! Peety, I think I have you to thank for helping me out with getting my posting straight! Thanks so much!! Got WAY more responses! I'll let you guys know what happens tomorrow - 6:00pm appointment for biopsy results. Thanks again!
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