Missing my Bag

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

New Member

Date Joined Dec 2010
Total Posts : 17
   Posted 8/23/2011 7:03 PM (GMT -6)   
Ok had bag for about 10 months with no real big problem was not afraid to leave the house had started golfing again. Well had it taken down May 13th 2011 they removed right side of colon 5 days after being home I got infection stomach liner did not have blood so it died they cutt me back open had wound vac for about 2 weeks. The wound has closed up (my stomach is like a chia pet) anyway I go bathroom 8 to 15 times in a day ( my butt is on fire) I take fiber in the morning to help thicken things up and imodium up tp 8 through out the day. Sometime its better seems if Iam busy out side I have no problem most of the time but I go in and relax and then it starts. Has anyone had problems like this at this point I realy miss the BAG mad
Rectal cancer 2010

Equestrian Mom
Veteran Member

Date Joined Mar 2008
Total Posts : 3115
   Posted 8/23/2011 9:14 PM (GMT -6)   
Have you tried Calmoseptine Lotion for your butt? It is amazing stuff and helps protect from butt burn. You can find it at your local pharmacy but you may have to ask the pharmacists...it's not always on the shelf but you don't need a prescription for it.

Give yourself some time...your body may not have adjusted to it's new way yet...
formally known as OHIO76 ~ honoring my daughter's passion!
Crohn’s dx 1989
some terrible years before my temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

David Martin
Regular Member

Date Joined Mar 2010
Total Posts : 172
   Posted 8/24/2011 4:19 AM (GMT -6)   
Thats one thing i dont understand, i can be active as heck and ill be fine but when im trying to relax i just get leakages and have to use the bathroom all the time. i thought it would be the other way around, to be active would be somewhat worse and to be lazy, well nothing much would happen. i use the bathroom quite a bit also 8-11 times a day "if i dont eat much that'll run through my system quick" and if i do eat well.. lets just say pass me another roll of toilet paper haha.

I also understand about missing your bag, even though its hard and doesnt look so bright just give it time, it might take some time but sooner or later it should get a bit better slowly. im still recovering myself.

@equestrian mom, ill have to try it out also, ive had a little bit of the same problem haha.
Adam, 16. Birthday Sept. 30.

Diagnosed with Ulcerative Colitis between 05-06. I have UC but its under control. I had surgery may 25 to remove my colon. 2nd surgery Aug. 31 surgery to reconnect to J-pouch. 3rd is dued to be dec. 7

New Member

Date Joined Dec 2010
Total Posts : 17
   Posted 8/26/2011 8:32 AM (GMT -6)   
Thanks equestrian mom I will give it a try. David doctor gave me something new yesterday its called Cholestyramine I will let you know how it works
Rectal cancer May 4th 2010
Temp Ielostomy August 13th 2010
Take down May 13th 2011
Chemo and Radiation

Scrap Girl
Veteran Member

Date Joined Jan 2007
Total Posts : 653
   Posted 8/26/2011 9:30 AM (GMT -6)   
Have you looked into a bidet seat? Mine is a coco - you can google it but there are lots of them out there. They are life changing. Cannot recommend them highly enough. You can kiss the creams goodbye because there will be no more burning or irritation whatsoever and you always have a clean feeling. Defnitely took my quality of life up a few notches. The seat sits on top of a normal toilet. Do you keep track of what you eat and how it affects you? Sugar and aspartme make my bms pretty liquidy but of course, I still consume them :)  

Veteran Member

Date Joined Dec 2010
Total Posts : 3332
   Posted 8/26/2011 11:22 AM (GMT -6)   
I have a biffy bidet, which was enormously helpful before I had my surgery. Now I have a permanent ileo, so I don't use it much, but they are amazing. Pays for itself in toilet paper too....
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

Regular Member

Date Joined Oct 2007
Total Posts : 318
   Posted 8/26/2011 9:01 PM (GMT -6)   
I third the bidet! I LOVE it. I hate having to go to the bathroom at work because all I have are wet wipes. The water is so cooling and is so much cleaner than just wiping. I know the biffys are the least expensive and the cocos (I have one of these) are much pricer, $350 and up. But they will help you for years and years, I thought it was an investment well worth the price. I also use calmoseptine lotion. You do have to ask the pharmacist for it but its great! A good preventative cream, the most heavy duty, is Ilex paste. You can get it at old timey pharmacies that sell ostomy supplies and medical equipment for beds and things, or online, I know that edgepark sells it. Price ranges from $10-$18 depending on the store. But this is a paste you apply once or twice a day and it actually stays on as long as you don't scrub at it. it absorbs fecal moisture to prevent the burn from ever starting. ilexpaste.com gives you some info.
-diagnosed with UC Dec 2006 at 22
-allergic or intolerant to all 5ASAs, sulfa and 6-mp
-emergency transverse colostomy on 9/13/10 from perforated colon
-J-pouch surgery step 1 of 2 3/21/11
-Takedown 6/13/11
I <3 my J-pouch!

Regular Member

Date Joined Apr 2011
Total Posts : 463
   Posted 8/28/2011 1:43 AM (GMT -6)   

Hello, I'm Serenitee, its nice to meet you. I was wondering if you wanted or had have the surgery to remove the bag, or could you have kept it if you wanted? 10-months is along time. It seems like I have read quite a few posts regarding the same thing you are saying. I was wondering with as many times as your going to the bathroom a day, is it bothersome or are you in any pain? What made you get the Ostomy before?

I know I NEVER want to go back at all, even if I could. I have had a Loop ileostomy since May 2011. I absolutely love it! Best decision I ever made. Only after 3-weeks, when I saw my Colon Surgeon since being in the Hospital, the first thing my husband & I asked was, "when can we make it permanent?" My husband and 7-kids could not believe how immediately much better I was. I see my Surgeon in Sept. & we will be discussing making it permanent. I would be terrified to go back the way it was. For 43-years I lived on a toilet 24/7...I love just emptying my bag a few times a day, no intestinal or stomach pain anymore.

Sending you Smiles & Rainbows your way. I hope everything gets better for you.
Your Healingwell Friend,

Loop ileostomy May 2011, Currently Pelvic & Bladder Trauma & Dysfunction...Caused by, Colon tore thru Vaginal Wall then Colon + Bladder fell out of my body together thru Vagina, leaving me with much destruction in its path. 15-surgeries over the years on various things.

Bipolar 2, Borderline, Panic-Anxiety Disorder, Ptsd

New Member

Date Joined Dec 2010
Total Posts : 17
   Posted 8/29/2011 1:25 PM (GMT -6)   
Thanks to all for the comments.

I had rectal cancer the first surgery took 13hrs to tumor cause my pelvic area is so small. When I talked to surgeon when it came time for take down my mind was pretty set on taking it all out. She said she would but chance of damageing other thing are pretty high. By the middle of the day it does get painful to go bath room I have just started taking Cholestyramine so iam trying find a good dose that works for me this stuff will stop you right up.
I just started keeping track after I ate peppers that I love BUT will never eat again Iam going check out those seats again thanks everyone its good not tobe alone
Rectal cancer May 4th 2010
Temp Ielostomy August 13th 2010
Take down May 13th 2011
Chemo and Radiation
New Topic Post Reply Printable Version
Forum Information
Currently it is Wednesday, September 19, 2018 7:58 PM (GMT -6)
There are a total of 3,004,893 posts in 329,179 threads.
View Active Threads

Who's Online
This forum has 161751 registered members. Please welcome our newest member, Roadranger82.
340 Guest(s), 16 Registered Member(s) are currently online.  Details
SoMuchFun, OzLyme, notsosicklygirl, Kct, Octobergirl, Jimbo58, sebreg, JOKERWILD477, Girlie, getting by, Tudpock18, mordant, F8, jay185, Sahale, iPoop