Have UC, may be joining this group

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princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 1/16/2009 11:52 PM (GMT -6)   
Hi my name is Adrienne and I have had UC about 13 years technically but have had bowel issues since I was a kid. I have had a very stubborn case which currently is only in the rectum but flaring so much.  I have met with a surgeon and will meet with a stoma nurse. I just get really nervous and scared. I would have to get the permanent ileostomy because of my rectal problems.  Thinking of never having a burning rectum and all the struggles in the bathroom sounds so great. My main concern is adjusting to having the bag. I just thought I would share. Thanks. smilewinkgrin
Diagnosed with Left-sided UC in 1995 at age 15, Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Aloe Juice, Canasa, Enotcort, Colazol, Anamantle, Remicade, etc... had 1 inch deep rectal ulcer 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Clorazepate, Lomotil,  Tylenol pm, Lyrica started 1/17/08,  Humira started 4/4/08, 6MP started 6/24/08


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/17/2009 12:25 PM (GMT -6)   
share away! and ask away, any questions you have we will do our best to answer them.

Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 1/17/2009 6:54 PM (GMT -6)   
Welcome Adrienne!
I just had my surgeries and it took a long time for me to get to the point where I accepted it. I toyed with the idea for years. And I just want you to know there is a light at the end of the tunnel. I'm young too and I worried about vanity issues, but I'm so much happier with the bag than I was with U/C! and I feel sooo much better. I can still have a reversal, but I feel so good, I'm not sure I want to. Good luck with your decision. We're happy to help with anything, or we'll just listen.
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; pred. and pain meds, (ileostomy temporary....not so sure?)

"Things turn out the best for those who make the best of the way things turn out."


Wade457
Regular Member


Date Joined Dec 2008
Total Posts : 91
   Posted 1/18/2009 7:30 AM (GMT -6)   
Having an ileostomy has allowed me to regain a life I had lost livng in bathrooms...... And being able to do things and look forwards to each day..

Yes, it takes some effort to learn how to use the bag. getting it to stay on reliably. and each step in the process sometimes can be slow.. But today .... and the people here will tell you.. there isn't anything I can't do.. except for boxing and probably karate.. and physically. my body has returned to the healthy one I had 7-8 years ago before everything started to go all to hell. Which reversed itself when my diseased colon was removed...

Having surgery is not the first option.. it is a day that changed my life forever. but if you choose to have it.. there is a light at the other end of the tunnel..

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 1/18/2009 9:15 AM (GMT -6)   

Adrienne, you are in very good company here, because we were all nervous about having surgery and getting an ostomy. I had left-sided Crohn's that was mostly in the rectum, so I understand what you've been through. sad

The good news is... surgery is a cure for UC and having an ostomy is so much easier and better than being sick. You will get your health and your life back. :-) So what if we go poo differently than everyone else? After all you've been through, I can honestly tell you that you will not miss your diseased colon or rectum. You will also stop taking all of the meds, which is a blessing.

Right now as I sit here, I cannot feel the ostomy pouch or wafer against my stomach. It's very flat, so it does not show through your clothes either. I just empty it when I go pee, so it's no trouble at all, and I change it once a week.

Changing the wafer is as easy as peel and stick, so it's no big deal either. The pouches snap and lock onto the wafer and empty through the end with a velcro or clip closure. You do not have to remove the pouch or rinse it out each time you empty. You only remove it to throw it away.

When you meet with the stoma nurse, ask her for some samples for you to try on. A good tip is to shave the blonde hairs on your stomach before applying the wafer, so you don't pull them out one by one when you remove it. Also, ask her for some adhesive remover wipes to use when you remove the wafer. That way it will just slide right off without it pulling on your skin.

If you have any questions, please feel free to ask, and we'll do our best to help.

Take care,

Cecilia


Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)


Bella_lostmybag
Regular Member


Date Joined Dec 2008
Total Posts : 104
   Posted 1/18/2009 12:18 PM (GMT -6)   
Hey Adrienne! Ive only had my ileostomy since Nov.19 so it hasnt been too long, and I was afraid that it would be extremely hard to get used to but its just become part of my life. lol A 3 year old wanted on my lap just a sec ago, and he told me not to get poop on him LOL just thought that was kinda funny. He knows what it is and why its there..so smart! But anyway lol, after you have it for a few months and get the hang of everything, it just becomes a part of your everyday life =]
17, SENIOR in high school
Dx with Ulcerative Colitis on March 18,2008
Tried what seemed like every medicine there is..nothing worked
Step1 Ileostomy on Nov.19,2008..waiting on Step2 =)
The past is history, the future is a mystery. Today is a gift, that's why it's called the present.


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 1/18/2009 11:54 PM (GMT -6)   
Thank you all soooo much for your kind and wonderful responses. I definitely relate to a lot of things you all said. I appreciate you all taking out time to share and welcome me. Thank you for explaining some of the mechanics of the ostomy, Celia. My GI has been encouraging me to get surgery for years and I was not ready before but I am now, or at least as much as I think I can be. I have some questions I will post as new threads the next couple days. Many thanks!

Adrienne
Diagnosed with Left-sided UC in 1995 at age 15, Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Aloe Juice, Canasa, Enotcort, Colazol, Anamantle, Remicade, etc... had 1 inch deep rectal ulcer 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Clorazepate, Lomotil,  Tylenol pm, Lyrica started 1/17/08,  Humira started 4/4/08, 6MP started 6/24/08

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