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tryingtokeepmyheadup
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Date Joined Nov 2010
Total Posts : 215
   Posted 6/4/2011 7:29 AM (GMT -6)   
Had my pre op screening yesterday, got my stoma site marked up.  My surgeon said she just had a first surgery w/  pouch patient leave the hospital in 2.5 days!  That's pretty amazing to hear, I didn't think it was even possible to leave that soon!  She also said you can drink right after surgery and eat the next day; that they don't wait for bowels to wake up or anything.  They are making it sound like a vacation, not surgery yeah
DX 2/10 UP. DX 10/10 UC. Now crohns colitis? Hospital 10/10, 01/11 dehydrated/anemic. Arthritis, sjogrens came w/colitis. On Asacol, codeine, tramadol, Xanax, Imodium. I've tried Canasa, Bentyl, Imuran, Prednisone, Flagyl, Cipro, Morphine, Vicodin, Prozac, Remicade ~ nothing worked. 1st surgery scheduled 6/8/11!

Another UC wife
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Date Joined Jun 2007
Total Posts : 2111
   Posted 6/4/2011 8:33 AM (GMT -6)   
While that sounds really good I fear sometimes they get you in and out of the hospital sometimes just too quick. I know it is good to get out of there (less risk of infections) and get home but if there is a lot of outpatient care immediately afterwards (depending on the surgery involved) then why not be in the hospital for those few days instead. Insurance has a lot to do with this too I know but I just think people are sent home to be cared by others a tad too soon most times. JMO
Wife of 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) & now pain free

nettiemoore
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Date Joined May 2010
Total Posts : 89
   Posted 6/4/2011 9:49 AM (GMT -6)   
I had my first surgery of three last Wednesday and they sent me home in about 2 days as well. I was pretty surprised because everyone had told me I'd be in the hospital for at least 5 days to a week. But they seemed really confident that I should go, even though I hadn't even had a chance for a solid meal. But it's ok, I have been doing alright at home!

Good luck with everything, though! Are you excited?
21 years old
UC since September 2008, diagnosed in April 2010

Going for a J-Pouch in 3 steps!
Surgery #1 - May 25th, 2011

Another UC wife
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Date Joined Jun 2007
Total Posts : 2111
   Posted 6/4/2011 1:53 PM (GMT -6)   
That is great...I guess with us "older folks" maybe they are extra cautious and keep us in longer...lol.
Wife of 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) & now pain free

Bay Area Guy
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Date Joined Jul 2010
Total Posts : 300
   Posted 6/4/2011 7:37 PM (GMT -6)   
I had emergency surgery in May, 2010 to create a temporary ileostomy and I was out of the hospital in just a couple of days. However, I had a couple of relapses which sent me back in on two different occasions for about two and a half weeks. I was also in for five days in July, 2010 when I got the ileostomy taken down (hurray!).

The biggest problem I faced when I got released the first time is that I just don't think I had enough education on what my wife and I were supposed to do, what I was supposed to eat, and how, in general, I was supposed to handle things. I don't think it helped that for one of those days I was in the hospital, I was so doped up after the operation that I couldn't remember a thing they told me. The end result was that I ended up not eating the right stuff. For example, we thought that spinach mixed in with some salmon as a salmon burger would be great for me. We later found out that spinach is pretty bad for an ileostomy. Another example was that they suggested I drink Gatorade to keep hydrated. What they didn't tell me was that I needed to cut the Gatorade with water to make sure I didn't get too much sugar since sugar just zips right through you and takes all the food with it. So, the end result was I got dehydrated and ended up back in the hospital and, just for good measure, I had a small bowel obstruction at the same time. They stuck an NG tube into me to get the blockage taken care of and the net result of that was I ended up aspirating something into my lungs, and that resulted, a week or so later, in pneumonia and another trip to the hospital.

So, I guess the moral of the story is to make sure YOU feel comfortable that you know what to do once they say you can go home and, if you don't feel comfortable, tell them and make sure you know what you need to know before going home.

I wish you good luck with the your procedure.

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 6/5/2011 7:13 AM (GMT -6)   
Be careful on the eating and drinking right away, it could set you back with an ileus. I don't think age has anything to do with it, but good old common sense tells me that a longer stay is wiser. The anesthesia puts the GI system to sleep and until you can pass gas, you should not be eating or drinking. I'm a bit surprised your surgeon would say that? It's best to be where you can get help immediately, rather than trying to break a hospital record on discharge.

Sue

Another UC wife
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Date Joined Jun 2007
Total Posts : 2111
   Posted 6/5/2011 7:46 AM (GMT -6)   
I am super "anal" lol when it comes to things.

Part of my husband's situation complicated things by an extra 2 days was the pain management part of things. Since he was on a fentanyl patch, oxycodone and gaba pentin prior to surgery he was not discharged until they got him off the IV meds and properly put on oral meds so he was not in a painful state. So his stay would have been 6 days versus the 8 he was in for. Since the Mayo clinic is almost 3 hours away we also stayed for 4 more days next door "just in case" any complications developed as I would have been a basket case to have to drive back there if something went screwy after being discharged.

Fortunately he tapered and got off the pain meds very successfully with no ill effects within about 6 weeks which was really great.

I would go really slow on the eating too so it transits easily too. Smaller frequent meals, chew chew chew, and lots of water and walking.
Wife of 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) & now pain free

tryingtokeepmyheadup
Regular Member


Date Joined Nov 2010
Total Posts : 215
   Posted 6/5/2011 9:30 AM (GMT -6)   
Nettie - I am very excited! I'm almost counting the hours lol. I've been in severe pain for about a year now so I just can't wait to deal with something new!
Bay Area Guy - Man, you really went through the ringer! Sorry to hear about all your troubles! I agree, during my pre op screening, the nurse started saying all the stuff I should be weary of after surgery to eat and I thought "am I supposed to remember all this, wanna write that down?" all I even remember is celery and pineapple! I can always look up stuff on here though too when I have questions and they did give me the ostomy nurse's number. I also didn't realize sugar was an issue, I'm a big juice drinker so I may have to change that. I am getting an epidural then oral meds so hopefully my head will be somewhat clear for the info they give me. I'll ask them to put all my instructions down on paper (they should do that anyway!)
Sue - I guess their theory is if they allow me to drink right away that they keep the bowels from going to sleep, in other words, my surgeon said the bowels go to sleep because they used to starve the patients the first couple days and they are finding they don't sleep if you eat or drink sooner. I hope she's right! I thought it sounded a bit risky too!
another UC wife - I also have to drive 3 hours one way. I too am staying nearby in a hotel afterwards for about 2 weeks "just in case". I'm pretty paranoid about blockages so I'll be sure to chew my food to a pulp :)
I was so worried about that long of a drive down to Duke but I made it thanks to imodium! Now I've just got to get a PICC line put in on the 7th then I get to use that awesome looking surgery soap for the next morning! How early was everyone's surgery, providing it wasn't emergency surgery?
DX 2/10 UP. DX 10/10 UC. Now crohns colitis? Hospital 10/10, 01/11 dehydrated/anemic. Arthritis, sjogrens came w/colitis. On Asacol, codeine, tramadol, Xanax, Imodium. I've tried Canasa, Bentyl, Imuran, Prednisone, Flagyl, Cipro, Morphine, Vicodin, Prozac, Remicade ~ nothing worked. 1st surgery scheduled 6/8/11!

Another UC wife
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Date Joined Jun 2007
Total Posts : 2111
   Posted 6/5/2011 4:29 PM (GMT -6)   
We left our hotel room at 6am which was about a 7-8 minute walk to the hospital area for a 6:30 appt. They took him promptly prepped him etc. and the first incision was at 8:32 am. My husband's surgery was more involving and the Dr finished up about 4pm and met with me directly afterwards at 4:20 It was the longest 7 1/2 hrs of my life with him in surgery with updates every 2 hours.

The 3 hr drive home really went very well. We stopped at a rest stop on the highway 1/2 way home to get out and walk and go to the men's room and even went to a seafood place on the way home which was too cool actually. He didn't eat a lot - had some fish, scallops and shrimp and a few fries -- we split a meal. Of course he chewed very slowly and a lot. But it was just so awesome to do that and we also stopped to visit with my sister who had emergency surgery 3 weeks earlier before we came home that day. He was pooped out for sure but in a good way.

The inflatable waffle cushion under his butt, a soft bed pillow to position to make him comfortable and a small soft travel pillow I brought to put in between the seat belt and he was very comfortable. I took bumps really easy and slow and no real herky jerky moves with the car either...lol. (10 weeks later we got into a rather bad auto accident and he had NO complications whatsoever from it which was a miracle. We were t-boned on the drivers side by a car of young gals not paying attention...he was driving! I thought for sure he was going to be in some kind of trouble. Plus the wafer and pouch never moved or was compromised. I thought the impact was gonna have him in a bit of a mess.)

You will do just fine. You are certainly taking the "what if" precautions to give you peace of mind. You may find after 5 days or so after discharge you are doing well and can go home. You will know what is best. We stayed for 4 days as I probably mentioned...hubby at first thought it was not necessary but when we left that day he admitted that any sooner would have been too soon for him as he needed those few days to get stronger. Plus it was VERY cold and our hotel connects with the Mayo Clinic so every day we could take a few long walks from the hotel to the clinic thru the connecting hallways. I had a wheelchair with us but he never needed to use it. If we were home he could not have done that as it was just too frigid outside right after Christmas even though we were in Florida. So the ability to walk for those 4 days really helped too.
Wife of 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) & now pain free

NewShinyCD
Regular Member


Date Joined Oct 2009
Total Posts : 474
   Posted 6/6/2011 1:38 PM (GMT -6)   
Be sure to listen to your surgeon about what to eat after the surgery.

I was stupid and thought I could eat restaurant food 3 days after I was released. Ended up having to go to the ER and getting my stomach pumped. LOL.

But now, I can eat whatever I want. Yay.

ByeByeUC
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Date Joined Feb 2011
Total Posts : 4544
   Posted 6/6/2011 2:42 PM (GMT -6)   
How many steps are you having your surgery done in? I had 2 step surgery so I had my colon removed and the creation of the j pouch at the same time with the diverting loop ileo. I was in the hospital for 11 days. I wish I could have gone home in 2! I guess if you are just having the colon removed then, it's much quicker to bounce back. My recovery was very tough but I still would do it over again in a heartbeat!
DX UC - in 2005 when I was 37
Tried every drug-even Remicade-nothing worked
Step 1: J-pouch surgery (Laparoscopic restorative proctocolectomy w/ temporary diverting loop ileostomy)6-25-10
Step 2: Take down surgery (Ileostomy reversal)10/8/10
Very pleased with my results

tryingtokeepmyheadup
Regular Member


Date Joined Nov 2010
Total Posts : 215
   Posted 6/6/2011 9:00 PM (GMT -6)   
byebyeUC - Im hopefully having a 2 step, that's the plan anyway. My surgeon said it'd be 6 -8 hours in surgery.
Newshinycd - I'd probably go for restaurant food too. what did you eat that you couldn't handle??
DX 2/10 UP. DX 10/10 UC. Now crohns colitis? Hospital 10/10, 01/11 dehydrated/anemic. Arthritis, sjogrens came w/colitis. On Asacol, codeine, tramadol, Xanax, Imodium. I've tried Canasa, Bentyl, Imuran, Prednisone, Flagyl, Cipro, Morphine, Vicodin, Prozac, Remicade ~ nothing worked. 1st surgery scheduled 6/8/11!

ByeByeUC
Veteran Member


Date Joined Feb 2011
Total Posts : 4544
   Posted 6/7/2011 7:57 AM (GMT -6)   
6-8 hours is right...I was on the table for 7 1/2 hours. I don't remember much of the first 2 days after surgery b/c I was pretty doped up on the pain meds...which is a good thing!
 
I didn't eat too much while in the hosptial (icky food anyway!) but by the time I got home I was eating small normal meals with my family. I remember stopping at Subway on the way home from the hosptial and devouring an italian sub!
 
All in all, it really wasn't that bad. Just keep your eye on the prize: No more UC and no more nasty drugs!!! Sending you well wishes for a speedy recovery!
DX UC - in 2005 when I was 37
Tried every drug-even Remicade-nothing worked
Step 1: J-pouch surgery (Laparoscopic restorative proctocolectomy w/ temporary diverting loop ileostomy)6-25-10
Step 2: Take down surgery (Ileostomy reversal)10/8/10
Very pleased with my results

Post Edited (ByeByeUC) : 6/7/2011 8:02:15 AM (GMT-6)


tryingtokeepmyheadup
Regular Member


Date Joined Nov 2010
Total Posts : 215
   Posted 6/7/2011 8:09 AM (GMT -6)   
awww thanks byebyeuc, I appreciate that! Today is my last day of UC.... yes!
you ate subway, that's great! I bet it was good after that hospital food! They are giving me an epidural not a pain pump so I don't know how clear I'll be after surgery.
No prep, no colonoscopy, and I get to drink a Gatorade the morning of surgery, lets do this!!! :)
DX 2/10 UP. DX 10/10 UC. Now crohns colitis? Hospital 10/10, 01/11 dehydrated/anemic. Arthritis, sjogrens came w/colitis. On Asacol, codeine, tramadol, Xanax, Imodium. I've tried Canasa, Bentyl, Imuran, Prednisone, Flagyl, Cipro, Morphine, Vicodin, Prozac, Remicade ~ nothing worked. 1st surgery scheduled 6/8/11!

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 6/7/2011 8:12 AM (GMT -6)   
6-8 hours is a long time! My surgery was under 2 hours. I didn't feel like eating until day 3 and then only small amounts.

Sue

blueglass
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Date Joined Dec 2010
Total Posts : 3332
   Posted 6/7/2011 10:00 AM (GMT -6)   
Hope it goes well today! Glad you're going to be done w/UC.

My surgery was long ... I was under for 10 hours..... it was laproscopic, and I guess i had a long colon, who knew? My surgeon called it tedious.... much better than if it were exciting.

Thinking of you
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

tryingtokeepmyheadup
Regular Member


Date Joined Nov 2010
Total Posts : 215
   Posted 6/12/2011 2:04 PM (GMT -6)   
Well, I made it! 7.5 hour surgery and they only removed my colon. I have to return for the j-pouch to be created. Im still in the hospital day 5 but am on oral meds so I expect to be D/C soon. Getting in and out of bed is the hardest! No UC pain makes it totally worth it though!!! Thanks for the well wishes!
DX 2/10 UP. DX 10/10 UC. Now crohns colitis? Hospital 10/10, 01/11 dehydrated/anemic. Arthritis, sjogrens came w/colitis. On Asacol, codeine, tramadol, Xanax, Imodium. I've tried Canasa, Bentyl, Imuran, Prednisone, Flagyl, Cipro, Morphine, Vicodin, Prozac, Remicade ~ nothing worked. 1st surgery scheduled 6/8/11!

Another UC wife
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Date Joined Jun 2007
Total Posts : 2111
   Posted 6/12/2011 3:58 PM (GMT -6)   
YAY!!! Great news.

Sorry you need the extra surgery but the surgeon knows best that's for sure.

Every day will be easier and easier but you already know some of that with the UC pain gone. YAY again!!!
Wife of 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) & now pain free

blueglass
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Date Joined Dec 2010
Total Posts : 3332
   Posted 6/13/2011 7:01 AM (GMT -6)   
Glad you're doing well. More Yay's: Yay!!!!
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

tryingtokeepmyheadup
Regular Member


Date Joined Nov 2010
Total Posts : 215
   Posted 6/13/2011 8:41 AM (GMT -6)   
I'm going to leave the hospital today. They just removed the IV from my neck and I feel so free!! They sent my colon off for testing to try to determine once and for all if I had crohns or colitis... but we all know I just had colitis, right?! (wink, I sure hope so) My incisions aren't nearly as bad as I expected them to look. I am still worried about changing my bag but can drain it just fine. I'm kinda paranoid about cutting the right size for around the stoma but at least after awhile it should stay the same size. some blood and mucous still passes out my bum so I hope the colitis starts to heal in the bit of rectum they left.
oh...and...YAY one step closer to the goal!!!
DX 2/10 UP. DX 10/10 UC. Now crohns colitis? Hospital 10/10, 01/11 dehydrated/anemic. Arthritis, sjogrens came w/colitis. On Asacol, codeine, tramadol, Xanax, Imodium. I've tried Canasa, Bentyl, Imuran, Prednisone, Flagyl, Cipro, Morphine, Vicodin, Prozac, Remicade ~ nothing worked. 1st surgery scheduled 6/8/11!

2b ColonFree
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Date Joined Nov 2008
Total Posts : 2603
   Posted 6/13/2011 8:49 AM (GMT -6)   
hey one more YAY for you! ;)) for leaving the hospital!! and many moreeee.... (YAYS)
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

blueglass
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Date Joined Dec 2010
Total Posts : 3332
   Posted 6/13/2011 10:09 AM (GMT -6)   
Congrats on getting out of the hospital! Do you have a visiting nurse to help you change the pouch the first few times? That's very helpful (well, if the nurse is a WOC and knows what s/he's doing....)

My docs thought I probably had Crohn's going in, and then my colon showed no signs of Crohns..... now my gi doc leans toward my having UC, but he's still not sure.... I think they can definitely tell if you have Crohn's from biopsies of the colon, but they can't tell for sure that it's UC. There's a specific granulatoma associated with Crohn's.

There is a lot of overlap between the diseases..... my gi doc says that Crohn's is probably 10 different diseases, and UC fewer..... who knows what these definitions will be when the DNA research goes further.

In any case, I hope they don't find any Crohn's in your biopsies!
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

B'derech
Regular Member


Date Joined May 2011
Total Posts : 31
   Posted 6/13/2011 10:18 AM (GMT -6)   
Hi Trying,

well you got back to the forum quick enough!
Why didn't they make the pouch this time?
I was on prednisolon at the time of my colectomy, and that is why they are letting that heal before forming the pouch, so I'll have to have the three operations.
I've also heard that they are in general getting better results from three operations than from two, so the trend now is to do the procedure over three operations.
Wishing you all the best and stay in good spirits!
B'Derech

tryingtokeepmyheadup
Regular Member


Date Joined Nov 2010
Total Posts : 215
   Posted 6/14/2011 10:54 AM (GMT -6)   
I am going to use home health for awhile to help with bag changes, one should be by today actually. I think it will help me out a lot!
They didn't make a pouch because my surgeon said that my colon was really hard with fatty tissue as if my body was trying to patch up perforations with fat. She said she needed it to be more flexible to work around my uterus and other things. I guess it being so hard was also the reason it took so long to cut it out.
I hope my second surgery making the pouch is not as tough as this one was, but it might be? I wonder, do they go back into all the previous incisions or less? I have 4 plus my stoma.
I am taking 6mg Dilaudid every 3 hours plus Tramadol for pain. Everyone was freaking out because they thought I shouldn't take so much but I have built up a tolerance to narcotics and it was the only thing that made discharge even bearable for me.
DX 2/10 UP. DX 10/10 UC. Now crohns colitis? Hospital 10/10, 01/11 dehydrated/anemic. Arthritis, sjogrens came w/colitis. On Asacol, codeine, tramadol, Xanax, Imodium. I've tried Canasa, Bentyl, Imuran, Prednisone, Flagyl, Cipro, Morphine, Vicodin, Prozac, Remicade ~ nothing worked. 1st surgery 6/8/11! 2 more to go!

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 6/14/2011 12:10 PM (GMT -6)   
welcome home and I hope you get a qualified nurse to help you with your changes to make it easier on yourself if you have nobody to assist you
Wife of 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) & now pain free
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