Total Proctocolectomy done!

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sno92c
Regular Member


Date Joined Sep 2009
Total Posts : 81
   Posted 6/30/2010 2:13 PM (GMT -6)   
Just had my total colon and rectum removed June 16th and still in the hospital over 2 weeks later. Had a bad experience where I was vomiting my stool so they replaced my ng tube and pumped me out. After removing it the next day my nausea went away but I still feel so full. I am finally on a full liquid diet but cant eat much at all. Anyone experience what I'm going through. I feel alone and need to feel like everything will be ok.

Thanks, Sabrina confused
Diagnosed in 2004 with Crohn's disease. Resection in 2009. Have tried almost every medication and nothing has worked. Next step permanent ostomie.


answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 6/30/2010 6:40 PM (GMT -6)   
Sabrina, so sorry to hear about your complications. My advice to you is to walk and walk some more. Don't worry about eating, that will come later. You will get hungry as your intestines are more awake anyway. Even drinking for me was difficult...

NewShinyCD
Regular Member


Date Joined Oct 2009
Total Posts : 474
   Posted 6/30/2010 7:49 PM (GMT -6)   
Why were you vomiting? Was it a bowel obstruction?

I had to go back into the hospital 4 days after they released me because I had a bowel obstruction. It happened apparently because I was very dehydrated and my body couldn't move anything in my intestine.
I had to get an NG tube and almost 20ish IV bags pumped in me before I started "going" normally.
21 y/o male livin' in Georgia. Diagnosed with Left-Sided Colitis in 2002; re-diagnosed with Pancolitis in Nov. 2009.
June 2010 I beat UC by having surgery.
Drugs tried: Just about every 5ASA medicine, enemas, prednisone, turmeric, fish oil, Remicade, psyllium seed powder, Metamucil.
Unable to take 6MP.
Step one of Jpouch surgery - 6/2/2010
Readmitted back to hospital because of blockage (my fault cause I ate Steak n Shake 3 days after being released from surgery) - 6/10/2010
Step two of Jpouch surgery - 9/?/2010


sno92c
Regular Member


Date Joined Sep 2009
Total Posts : 81
   Posted 7/2/2010 1:12 PM (GMT -6)   
I think they fed me too soon and nothing was moving through my system so I began vomiting. After many tests there was no obstruction just a lazy intestine. I'm trying to walk a lot but I am so sick of this hospital that I just want to sit in my room. Been here for 17 days and hoping to go home tomorrow. Thank you for your advice, makes me less depressed. Anxious about going home and placing my own equipment on but home health nurse will assist me. I hate the dangle of the pouch so I already ordered ostomy underwear. lol
Diagnosed in 2004 with Crohn's disease. Resection in 2009. Have tried almost every medication and nothing has worked. Next step permanent ostomie.


answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 7/2/2010 2:49 PM (GMT -6)   
Sno, I do not like the dangle of the ouch either. And when it gets full, it pulls on my sore abdomen. OUCH Where did you order underpants? I am also nervous about changing the pouch, but I am hoping my husband will be here to help me. I have home health, but they have only been out once, and that was just to do the paperwork...I am not sure what they are supposed to be doing since they have yet to call me again. I am most nervous about cutting the barrier to fit around the stoma. I don't like that at all and it is hard for me to see all the way around the stoma. UGH

sno92c
Regular Member


Date Joined Sep 2009
Total Posts : 81
   Posted 7/2/2010 5:12 PM (GMT -6)   
Wow seems like we are having the same types of problems answers! I ordered panties from ostomysecrets.com. The women who created them has an ostomy and everyone that works for her does to. So I take it you just got an ostomy as well? What a crazy life huh but I'm told things will get better.
Diagnosed in 2004 with Crohn's disease. Resection in 2009. Have tried almost every medication and nothing has worked. Next step permanent ostomie.


cleo35
Regular Member


Date Joined Feb 2007
Total Posts : 430
   Posted 7/6/2010 4:28 PM (GMT -6)   
sno, the longer you sit in your room the longer you're going to sit in your room if you get me - get up and WALK. You'll build stamina and get your intestines moving again!

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 7/6/2010 7:33 PM (GMT -6)   
Sabrina,

It's post-op ileus. I had it for a whole MONTH after my surgery. BUt I had not been able to eat for 7 months prior to my surgery and they rushed my diet. So I doubt yours will last a month. BUT you will likely be fine as it is still somewhat close out to your surgery. Best wishes, Rosemary

fish1
Regular Member


Date Joined Jan 2010
Total Posts : 106
   Posted 7/6/2010 8:40 PM (GMT -6)   
I also had post op Ileous  March 2010 and had the NG for 14 days. The doc kept telling me be patient! smhair   I was not very... It will relax and start working in time, the hard part for me was I had no clue when. Everyone is right walking will help. It will also give you something to do! If you have a mind to... pray ....and know that many of us have been on the same road. I wish you a speedy recovery.
50 yr old man, Colon Cancer survivor 2005
90 % of colon removed 2005 The rest 2-23-10
Illistomy scheduled for Feb-23-10 Done!
Healing up March 2010
<*(((((><


80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 7/7/2010 6:57 PM (GMT -6)   
I don't like the feeling of my pouch dangling either so I wear a mini pouch.
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
Total Proctocolectomy and Permanent Ileostomy 3/18/10! :)
Blockage/Ileo revision 6/8/10 :/
 
Tried: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas, Psyllium Seed Powder... Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently taking: Prenatal Vitamin, Vitamin B 12 Complex, Biotin, Vitamin D, Calcium, Flomax (for urinary retention). 


julsgirl
Regular Member


Date Joined May 2010
Total Posts : 37
   Posted 7/8/2010 2:00 AM (GMT -6)   
hi Sabrina, u poor thing, the waiting game really does suck ass but its really all u can do, that and walk. ur probably sick from hearing the word WALK but every1s right it dose help.
I jst had a perm ilio put in only 10 days ago.no meds worked for me either. i was home after 6 days and am doing pretty well. Sore as hell but the meds help. in time, ul be fine!! seriously. and ul be thankful u did this/. when i had my 1st ilio put in lst yr i was also in hosp for 2 weeks and i thought i was going crazy! so i know how u feel.
I dnt mind the dangling pouch around the house. but when im out i put a mini pouch on. Im kinda used to the pouch as iv had a temp ilio for a yr now. It does get easier and u do get used to it.
How old r u if u dnt mind me asking/? good luck with it all.

juls

sno92c
Regular Member


Date Joined Sep 2009
Total Posts : 81
   Posted 7/9/2010 9:50 AM (GMT -6)   
Hi Juls, I'm 32 years old soon to be 33. THank you for your comments they really help me get through this transition in my life. I am doing well now, just worried that my incision may be infected. A nurse is coming out to see it today. I have been eating well and drinking lots of water. I know things will get easier soon just gotta wait.
Diagnosed in 2004 with Crohn's disease. Resection in 2009. Have tried almost every medication and nothing has worked. Next step permanent ostomie.


answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 7/9/2010 10:31 AM (GMT -6)   
Juls, have you noticed if the end ileostomy has been easier to deal with than the temporary loop ileostomy?

julsgirl
Regular Member


Date Joined May 2010
Total Posts : 37
   Posted 7/11/2010 12:06 AM (GMT -6)   
ur welcome sabrina, hope ur doing ok.

so far answerme its the same... the stoma is actually beta, its sits better on my tum. But the output is the same so not much diference.
Do have a perm ilio??

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 7/11/2010 12:09 PM (GMT -6)   
Juls, my ileostomy is a temporary loop ileostomy...not sure if I will be able to have a reversal. I have to have tests ran to see if my rectum works since having surgery. If my rectum does not work, then I will keep the ileostomy, but was wondering if I would have to go in and have the loop made into a closed????
Diagnosed with colonic inertia, anismus, rectocele, and intussusecption

Surgery June 21, 2010-subtotal colectomy, rectopexy, and a temporary loop ileostomy

Take down-TBA


sno92c
Regular Member


Date Joined Sep 2009
Total Posts : 81
   Posted 7/11/2010 11:18 PM (GMT -6)   
He everyone, just wanted to let ya know that I am feeling much better. I can tell a big difference without my colon and it's great. They only bad thing is my butt hurts so bad and is very sensitive. Being romantic is not an option! I have been eating all kinds of foods too with no problems. A nurse is coming tomorrow to help me change my system. For some reason every time I take a shower the tape part rolls down to the gummy part of my wafer. In the hospital it always stayed on perfectly. I'm even using soap that is none moisturizing. Any suggestions?
Diagnosed in 2004 with Crohn's disease. Resection in 2009. Have tried almost every medication and nothing has worked. Next step permanent ostomie.


answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 7/12/2010 11:21 AM (GMT -6)   
Sno, I do not take showers until I am due for a change. I take shallow baths to keep my bag dry and wash my hair in the sink....but, I ordered some pink tape and some sure seal rings and just got them in the mail today, so I am going to try them to see if this helps. I am tired of not being able to take a shower...
Diagnosed w/colonic inertia, obstructive defecation syndrome, anismus, rectocele, and intussecption
2005-hysterectomy w/pelvic prolapse repairs
2006-sacralcolopopexy
2010-subtotal colectomy, rectopexy, and temporary diverting loop ileostomy
Take-Down-TBA
 


cleo35
Regular Member


Date Joined Feb 2007
Total Posts : 430
   Posted 7/12/2010 12:25 PM (GMT -6)   
Your can cover the entire bag and several inches of skin around it with Press n' Seal (somebody on this site actually gave me that advice a long time ago). This will keep the bag and wafer mostly dry. Personally, I wasn't about to give up showers when I ended up with an ostomy. Also I "outline" the tape part with four pieces of Opsite tape. I overlap the tape on the wafer and my skin with it. It's caused no skin issues for me and is waterproof so it helps with high-humidity issues as well.

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 7/12/2010 3:31 PM (GMT -6)   
If you are using Skin Prep only use it right around the stoma...it causes the tape part to lift when wet...so if you've covered the entire area with the prep the tape lifts during the shower or bathshocked

There is no reason to not get the appliance wet...use the Sure Seal and you won't have any problems and they last for the entire wafer life smilewinkgrin (I just spent 9 days swimming in the Atlantic and had NO issues :-) )
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


polishdan
Veteran Member


Date Joined Mar 2010
Total Posts : 1595
   Posted 7/12/2010 6:42 PM (GMT -6)   
Sno
I have been wearing a Convatec pouch 400598 for over two years. The tape is waterproof and never comes off. I shower every day. I did try another Convatec pouch and the tape was not waterproof and was expected to come off when wet. I called convatec and was told to just pat it back down after I shower. Sticky mess, but it did stick back down. Perhaps you can contact your supplier or manufacturer about your problem. Maybe it is expected to come loose.

Dan
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