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

supernova
Regular Member


Date Joined Jul 2006
Total Posts : 69
   Posted 3/5/2011 1:17 PM (GMT -6)   
Hey Everybody!
Yep, I got back home from the hospital yesterday after lunch! Doc came in and told me how I made the right decision because my colon was very very bad. It is really weird how with this disease (UC) you go on living and don't realize how bad you really are! He also told me that he was pleasantly surprised that I was doing much better than expected and was three days ahead of schedule. The nurses were also very impressed at how quickly I got better. I guess it was my disease colon holding me back all this time. I haven't had a "down time" yet, I guess I am just the type of person who looks at an ileostomy from a science point a view. Lucky for me my husband does too. He said it was like some sort of science experiment.. hehe. I can tell with every day that the surgery pain is getting less and less. I will admitt that my days have revolved around the stoma, constantly checking; sometimes just watching it and thinking wow! It's moving! crazy! Feeling good and only going up from here! Thanks for everyones words of encouragement; I went into the surgery knowing what to expect and wasn't totally side swiped! Thanks again! :)
29 year old female
Ulcerative colitis- 13 years
Current meds- sulfasalzine
Meds tried- suppositories, enemas, asacol, prednisone, lialda, immuran, sulfa, remicade
End ileostomy surgery- March 1st

supernova
Regular Member


Date Joined Jul 2006
Total Posts : 69
   Posted 3/5/2011 1:24 PM (GMT -6)   
Sorry, one more thing you may have some insight into. I changed my bag with the ostomy nurse yesterday before I left the hospital, the wafer was like a perfect fit to my stoma. Now this afternoon I feel a little itchy somewhere under that wafer. I don't see how I would have a leak already, we used the paste too. Does it itch from the stitching around the stoma? or is this a leak already? Just a little confused.. and of course it's Saturday.
29 year old female
Ulcerative colitis- 13 years
Current meds- sulfasalzine
Meds tried- suppositories, enemas, asacol, prednisone, lialda, immuran, sulfa, remicade
End ileostomy surgery- March 1st

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 3/5/2011 2:06 PM (GMT -6)   
Sounds like you are doing great...congrats! Just remember to still take it easy since you did just have SURGERY!

You are probably moving around a lot more than you were in the hospital so it is possible you have a little leak. Is your output still liquid? That tends to make leaks happen faster:( If the itching continues you may want to change the appliance...pay close attention to the stoma 'wear marks' on your wafer...that will tell you where the issue starts.

Keep us posted!
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!

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 3/5/2011 2:50 PM (GMT -6)   
YAY so glad you're home and doing well :) if the itching intesifies, then maybe it is time to change the wafer. have you had the chance to do it by your self yet?
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

supernova
Regular Member


Date Joined Jul 2006
Total Posts : 69
   Posted 3/5/2011 2:55 PM (GMT -6)   
I have changed it myself.. definately doesn't make me an experert... hehe. :) The output is kinda mushy like, sometimes liquid in the morning. What is a "stoma wear mark"? And I just changed the pouch, took it off in the shower. The itching was crazy! When I got everything cleaned up, there wasn't any irritated spots, just smidge (almost too small to count) red spot right next to the stoma. It still itches a little, but not as bad. I used the paste the last time and this time the ring. Does that make a difference in the irriation level? Is the paste more irritating than the ring?
29 year old female
Ulcerative colitis- 13 years
Current meds- sulfasalzine
Meds tried- suppositories, enemas, asacol, prednisone, lialda, immuran, sulfa, remicade
End ileostomy surgery- March 1st

stripey
Veteran Member


Date Joined Feb 2011
Total Posts : 1059
   Posted 3/5/2011 3:14 PM (GMT -6)   
I did find that the stiches began to pull and itch after about a week, but then they started dissolving soon after that so stopped the problem. Also as you move around more and the swelling subsides you will find that you may have little gaps betweeen wafer and stoma. I use a barrier wipe to protect the skin around the stoma and then put the paste on top. I find that paste better as it is more mobile and so doesn't rub whereas the rings were more static.

The wear pattern is a bit like the wear pattern on sole of your shoes, you may find as you increase the wear time of your wafer it will show up more. It shows up if you have a leak where it started and so you can adjust the application of paste accordingly. and also shows if an area is not sticking as well as other areas.
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 3/5/2011 3:19 PM (GMT -6)   
Yay Supernova! So glad to hear you're doing well. That was how I was when I got my ostomy as well. Isn't it great to know that your UC is GONE??? :) Keep up the good attitude, and drink lots of water and rest:)
Stephanie, 29 years old

March 2000-Diagnosed Crohn's Colitis
(Tried every drug imaginable, but lived 10 years with daily diarrhea)
March 18, 2010-Total Proctocolectomy and Permanent Ileostomy! :)
(Now med free, 4 subsequent procedures to correct blockages at stoma site)

Stoma named Zoe...She's my best bud!! :)

Disneynut66
Veteran Member


Date Joined Apr 2009
Total Posts : 587
   Posted 3/5/2011 4:17 PM (GMT -6)   
That is so great that everything is going so well. When I have a leak it itches crazily and when I take my appliance off there are brown areas where it leaked.

Just thinking about it makes my stoma area itch!
Diagnosed 2006. 1st step of 2 step j-pouch 1/3/11. 2nd step will be in April! So done with this disease.

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5962
   Posted 3/5/2011 7:16 PM (GMT -6)   
     So glad you are doing well.  I had some irritation under the wafer.  Hollister bags leaked on me twice.  In the hospital they used some kind of paste and then a wafer of some sort and the bag on top (Hollister).  All this seemed sort of tedious to me.  Trial and error this game of "what ostomy device suits me!"  I have been using the one piece Coloplast Sensura...they are great!!!  Never, ever had one leak and let me tell ya....I have been a baaaaad girl.  Sometimes I forget I am wearing a "bag" and when I start to walk around...I think, uh oh.  They say empty when bag is about 1/3 full but mine gets to be around 1/2 full.
     My surgeon told me I had one nasty looking rectum...badly diseased.  Colon didn't look bad at all, only minor diverticulosis.  Too bad they couldn't put it to better use.  Oh well.  Wishing you best of health!!!

J's Mom
Regular Member


Date Joined Oct 2008
Total Posts : 109
   Posted 3/5/2011 8:34 PM (GMT -6)   
Wonderful news. As you said, each day will get even better!

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 3/5/2011 8:44 PM (GMT -6)   
supernova, congratulations, that is very good news and its always good to be on the recovery side of a surgery, hope you do well.

david in sc (Urostomy 5 months ago, my own little convex stoma)
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 2/11 1.24
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10,

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 3/5/2011 10:13 PM (GMT -6)   
awesome news...welcome home...try not to overdo even though you sound like your doing very well.  This was very major surgery and your body needs to heal too.

Blueheron
Veteran Member


Date Joined Feb 2010
Total Posts : 720
   Posted 3/5/2011 10:26 PM (GMT -6)   
Glad to hear you are home and that your surgery went so well. I had some itchiness around my stoma after surgery, but when I took off my wafer, I never saw any irritation. I just assumed it was the stitches. It went away after a while. My stoma shrunk a lot after surgery too. I had to redo my pattern every time I changed the appliance. It finally slowed down around 10 weeks.
-Officially diagnosed with UC in 2006, though had symptoms since 1999.
-Had mild/moderate symptoms continuously until severe flare in autumn 2010 which required 2-week hospital stay
-Took Asacol, Rowasa, Canasa and Prednisone to manage flares but meds stopped working
-Tried 1 infusion of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 3/6/2011 1:05 AM (GMT -6)   
hey that's great you're able to change all by yourself, good job! oh and don't worry, you'll be a pro before you know it :)

for me, the addapt rings work much better than the paste - makes a longer wear time. wear time is not the same for everybody, some have to change after 3 days (not so good) and some once a week. the stoma nurses recommend every 4-5 days. i use the 2 piece coloplast sensura + addapt rings and it usually lasts for a whole week.
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

Blueheron
Veteran Member


Date Joined Feb 2010
Total Posts : 720
   Posted 3/6/2011 2:38 PM (GMT -6)   
I use the Adapt Rings too and love them. I can only use them for about 4 days though before they start to erode, exposing the skin right next to mt stoma. I don't mind changing my appliance every 4 days though. I think I would worry about what my stoma/skin was doing under there if I tried to make appliances last a whole week. I always peel it back with a bit of apprehension at what I might find, but have been happy that I have had no significant irritations so far:) Just a teeny-tiny one right up against the underside of my stoma where it flops down a bit, but it is soooo thin and small and easily fixed with stoma powder every once in a while. I don't know if it counts either:)

My output was like yours at first... liquidy in the morning and then sort of mushy paste in the afternoon/evening. The liquid part went away at around 8 weeks and now it is pretty consistently like applesauce or maybe even a little thicker.
-Officially diagnosed with UC in 2006, though had symptoms since 1999.
-Had mild/moderate symptoms continuously until severe flare in autumn 2010 which required 2-week hospital stay
-Took Asacol, Rowasa, Canasa and Prednisone to manage flares but meds stopped working
-Tried 1 infusion of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010

stripey
Veteran Member


Date Joined Feb 2011
Total Posts : 1059
   Posted 3/6/2011 6:46 PM (GMT -6)   
Congrats Supernova on getting home early. It is true you don't realise how bad you are until the reason for that is taken away. The night after my first op to do the loop ileo was bliss, no running to the toilet, only got out of bed to pee and spent all night just looking at the stoma through the clear bag. Nurses was shocked at that as they didn't expect me to be up and about til the next day but I felt soooo good!

Six months later when they had to change it to an end ileo, I was back to work after 10 days, those were in the daft days of being young and it was Xmas so didn't want to miss all the parties. Then 4 weeks later went skiing. Came back and went to see my surgeon for my follow up and he nearly had heart attack when I told him I'd been skiing. Was knackered, but hell it felt good and gave me something to aim for. Not what I would recommend but like I said I was 21 yo and young and daft! lol
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.

supernova
Regular Member


Date Joined Jul 2006
Total Posts : 69
   Posted 3/7/2011 7:35 AM (GMT -6)   
Thanks for all the congrats and inputs! I do like the rings much better than the paste, but the nurse only sent me home with one, so I will have to use the paste until I get my supplies. I went to the store yesterday, made it, but barely. Skiing.. at four weeks, good for you! Does chasing my one year old count as exercise? hehe.. Have a great one guys! :)
29 year old female
Ulcerative colitis- 13 years
Current meds- sulfasalzine
Meds tried- suppositories, enemas, asacol, prednisone, lialda, immuran, sulfa, remicade
End ileostomy surgery- March 1st

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 3/7/2011 8:24 AM (GMT -6)   
Chasing a one year old DEFINITELY counts as exercise!!!
64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) and no longer in pain.

run4pancakes
Veteran Member


Date Joined Oct 2008
Total Posts : 938
   Posted 3/7/2011 12:31 PM (GMT -6)   
You sound like you are doing so well! This gives me so much hope that things won't be so bad for me either. :-) I'm so happy for you. Make sure you're getting some rest though, sounds like you've been busy!

Oh, I have to tell you how much I laughed at your post on my other thread about putting the wafer on all hunched over and then being stuck. I can totally picture myself doing something like that! :-D
UC dx 2/08
Former treatment:

Asacol, Rowasa, Prednisone, Canasa, Cortenema

Current treatment:

Lialda (4 pills 1xday), Prednisone, Rowasa nightly, B-12 Supplement

Unable to stay off Prednisone for more than 4-6 weeks without flare up. Looking at other options.

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 3/7/2011 1:04 PM (GMT -6)   
Great to hear that you're doing so well!

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 3/7/2011 9:54 PM (GMT -6)   
Great going, Nova, glad you are safely on the recovery side, sure sounds like you make good progress. Hope its all uphill for you.

David in SC

Prostate Cancer & Urostomy
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 2/11 1.24
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10,

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5962
   Posted 3/8/2011 1:18 PM (GMT -6)   
     Give the one piece Coloplast Sensura bags a shot.  I had problems with the Hollister with leakage.  I LOVE the Coloplast.  I can take showers, baths...never a problem and I only change them twice a week. :-)

ICallHimSteve
New Member


Date Joined Mar 2011
Total Posts : 4
   Posted 3/9/2011 4:24 AM (GMT -6)   
For a while after the surgery, your stoma will decrease in size due to swelling going down and such. For a few weeks and months maybe you're just going to have to keep measuring and cutting to size until it gets to its normal size.

The itching might just be the skin healing and stoma attaching to your abdomen, mine was REALLY itchy for a few weeks, then nothing.

I use the Hollister two piece, with the cut to fit flextend skin wafer. Works like a charm. After getting back from my surgery I got samples from 5 or 6 companies, and those worked the best for me. Usually can get 7-8 days easily from a wafer.

The hardest part for me, strangely enough, was realizing my stoma had a mind of its own and did its own thing. Being able to find small things to laugh about it tend to help too.
Mike, 28 y/o male
D/X UC Aug 2000 at age 18.
Flareups with hospital stays 2002, 2003, 2005, 2010x2)
Asacol, Lialda, Prednisone (up to 100 mg/day), Remicade (10mg/kg), all failed miserably.
Total colectomy Oct 2010 with perm ileostomy.

Still rollin, no colon!

I call him Steve, b/c like his namesake, he's a pain in my side, he tried to kill me, and each time he opens his mouth crap comes out!
New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, June 17, 2018 8:19 PM (GMT -6)
There are a total of 2,972,658 posts in 326,004 threads.
View Active Threads


Who's Online
This forum has 160831 registered members. Please welcome our newest member, Superifffic.
399 Guest(s), 6 Registered Member(s) are currently online.  Details
JL757, Mercy&Grace, dmanIndy, Lightlife, ddyss, elvin