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05-31-2010, 07:44 PM   #1
acg101
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Surgery Time Second opinion Advice

I go to the same GI for the past 15 years. The first GI I picked from the “best doctors” book and after few weeks in the hospital, I realized that I had to get myself another GI or I will end up in big trouble.
The new GI is considered one of the best ever and he gave me 10% to save my colon. Here we are 15 years later, with my colon, I have tried every medication out there and the latest one is Cimzia after Remicade stopped working. Changed my diet, lost 30 pounds and dealt with the pain and bleeding bm’s. The quality of my life deteriorated to a point that I hardly could go on a trip with my wife or attend to business matters.
Last week, I had few stormy days of pain and bleeding as I was preparing for my colonoscopy. I know that I have a narrowing problem from the bm and let me tell you the prep was painful. The colonoscopy confirmed what I already have known for the past 4 months that I had a severe narrowing. Although my pain has subsided considerably for the past 4 months, apparently the possible side effects of my meds are adhesion and strictures which lead to +80% narrowing in 3 locations. The colonoscopy pictures looked bad enough and the GI recommendation is Proctocolectomy surgery.
I saw the pictures but would love to hear your opinion about getting a second opinion. I have tons of questions about the recovery time, catheters, and post surgery pain control and would love to hear your experience.
My GI is in NYC and the hospital is Mt Sinai

Best
acg
06-01-2010, 08:45 AM   #2
Mark33180
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ACG I just went through that same thing this past month. I went and got the second opinion from a different surgeon and he was very good about talking about options and what we could do to get me fixed up. We eventually decided to take out my bad section of colon. That surgery was on May 5th and i am still recovering, it takes a good while to recover because from what i understand they basically take out your colon cut out the bad section and then place it back in your body, bad part about this is that then your body has to take the time to readjust your insides to make them go where they need to go. As far as the pain control, they had me on an epidural, so i had to have a catheter, and i didn't like it. its irritating to pee. not that it burns or anything but it feels like my bladder is getting bigger instead of emptying, maybe its just irritated from the catheter i don't know. If you want to know anything else let me know.
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06-01-2010, 10:03 AM   #3
acg101
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hey Mark, thanks so much for the kind advice. Reading some of your earlier posts, I realized what you just went through, and I hope you are feeling much better. I feel ready for my surgery and would like a second opinion if I should remove the entire colon although my symptoms always been in the lower left/rectum?
without the epidural could they do without the cath?
best wishes to you!
acg (dan)
06-01-2010, 10:30 AM   #4
CDDad
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Hi Acq,
Do you have a surgeon selected yet? Mine was Dr Bauer and his partner Dr Chessin did the "bottom" part.
I'm not sure if all Proctocolectomies are a 2 surgeon deal, but mine was.
I've had two previous surgeries so laparoscopic was not an option.

My decision for Total Proctocolecomy was easier because my case involved high grade dysplasia. Without the threat of cancer, it must be a much tougher decision!

It can't hurt to get a 2nd opinion, this surgery is major, and of course life changing with the Ileostomy.

I thought Mt Sinai was a good choice and the nurses were very good. I did ask my surgeon for the epidural and that was great, but became annoying after a few days. I did not have any pain at all right after surgery. Maybe the epi shifted on my back and that is why it became uncomfortable.

I too had the foley cath. Not a huge deal, but not fun. Most of the time I did not think about it, but after a few days it was irritating my penis - probably from the tube shifting around a bit. What a relief when they removed it after a few days.

On to recovery time - It has been 6 weeks for me and I'm just about back to normal. But I won't sugar coat it, it has been very challenging. The toughest part for me was my perianal incision opening up, which I think they said happens 30-40% of the time.

For post surgery pain control, I just used tylenol. Looking back, I should have requested Percocet. They had given me a script for Dilaudid, but I did not want anything to do with it. But, the pain with just tylenol was too much and I just dealt with it. Probably causing too much stress.

I guess thats it for now. I know some others have had an eaiser time with their surgery, so you might have a better experience than me. On a positive note, my ostomy seems to be well done, and functioning fine.

One more thing, sexual problems after surgery are a risk with Protocolectomy. Make sure you are aware. Luckily, I am pretty much the same - not exactly, but very close. I do still have some numbness in the area of the perianal incision. I hope I am not bringing you down, but just want you hear the good and bad.
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Crohns since 1989
3 Surgeries - Hemicolectomy '08, Sm Bowel Resection '09, Proctocolectomy '10. Lets hope I'm done now!
On Protonix and Humira.

Last edited by CDDad; 06-01-2010 at 10:37 AM.
06-01-2010, 11:24 AM   #5
acg101
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Hi Joe,
Thanks so much for the informative input. You are 6 weeks post op and I was very interested to hear about your particular recovery details. Could you have had telephone work-related calls during the course of these 6 weeks?
I did not choose a surgeon yet, as I am trying to find out if it would be possible to do it laproscopically. I am meeting with one on Thursday and one next Wed. Marion did the colonoscopy and I have known him for 15 years. My surgery will be done by two teams, one for the colon and one for the rectum.
You and I communicated before your surgery about the pain meds and about our shared not-so-great experiences with diluted. In any event, I know I can’t not handle the morphine.
The surgery decision is a quality of life situation and reality check. I have tried every meds out there and out of the 16 years I have had 10 good years and 6 bad. Right now the Cimzia/imuran are having some unforeseen side effects.
I am concerned about the post surgery impact on the sexual activity, not as much as the mechanics with the bag (which I am sure one can work around....) but the possibility that the ‘bottom’ surgery will damage the 'system'.
Regarding your perianal incision, why they did not saw it back up? Is it all healed up now? Did the silver bars work?
Can you drive a car/in a car?
Thanks so much again
acg (dan)
06-02-2010, 02:35 PM   #6
CDDad
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I guess I could have handled some work related calls after maybe 2 weeks at home. But, I would not have wanted to. Still too much pain and discomfort and I just wanted to try and relax - not get stressed out with work.

As for pain meds, they actually started me off with Fentanly. I thought it was making me itch, so I asked for Dilaudid after a day or 2 in the hospital. Looking back, maybe I should stayed with the Fentanly. Maybe its just too easy to have nasty side effects with any narcotics.

The sexual side effects are a big concern but my thoughts were; why worry about something that I have no control over. Well, actually the only "control" is to pick the most experienced surgeon you can find. I was just going to deal with what ever happened, but luckily it worked out for me. But I have read a few other postings around the internet from men that were not so lucky and are having issues.

I'm not sure why they don't sew the perianal incision back up. I had read before my surgery that they leave it open, so I was prepared. I just discovered it on my last day in the hospital and was so happy to be leaving that I did not care. I called my surgeon when I got home and he said to just pack it. Here I am almost 7 weeks later and it is still open. I think maybe it has 2 weeks to go, maybe 3. It is so much smaller now, but it was shocking at first (at least to me). About 2 weeks after I got home, it started causing me pain, which stopped a few days ago. I was taking tylenol around the clock.

I used the silver nitrate sticks a few times, but I'm just not sure what I am doing. I have been seeing a local surgeon weekly, so he had been treating my wound. I would say this has been the smartest thing I have done to ease my mind about these incisions. He did my previous surgery so maybe thats why he is doing this for me.

I have been driving for a few weeks. I really was not going anywhere so I did not drive much. After about 5 weeks, I felt fine for longer drives.

Last edited by CDDad; 06-02-2010 at 02:37 PM.
06-02-2010, 03:46 PM   #7
acg101
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Thanks Joe - My biobsies came back today with minor dysplasia so I have one more reason to go forward with the surgery (not that I needed one...).

I am concerned about the pain meds because my previous not-so-great experiences but I dont want to be in pain neither. I've Never used the Fent patch?


Did your insurance plan 'allow' you to choose your specific surgeon?
How soon after the hospital, would I be able to climb staies? my bedroom is on the second floor?

thank you for your support and advice.
06-02-2010, 06:48 PM   #8
CDDad
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Sorry to hear about the dysplsia. By the way, the Fent was not a patch but by IV. I just remember having to itch all over. Not terrible, just slightly annoying. My thigh, then a minute later my face, then my arm, etc.

My insurance allows out of network at 50%. Dr Bauer is out of network but my insurance still has not processed the bill yet. It's a fairly large bill so maybe that's why. The "in network" hospital bill was processed in a few days and that was much larger!
So yes, I can choose my surgeon but it might cost me.

One good thing is climbing stairs has never been a problem for me after surgery. My bedroom is on the 2nd floor too and I had no problem on the 1st day home. Getting up from the couch, now that's a different matter. I would kind of roll off on to my knee. Major ab action to get up from a reclined position!

I was just thinking about then I was in the hospital, I was feeling horrible and unable to eat. After the doc visited, a nurse came over with a NG tube. I had a bad experience with that on my previous surgery so I refused it. Not that I recommend refusing treatment, but the fact is - you can. Not sure why that just popped into my mind.
06-02-2010, 08:29 PM   #9
acg101
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Joe, it is so helpful to get your input... I am getting a second opinion tomorrow, although because the quality-of-life issues I will most likely go for the surgery. I have made the mental leap...
I am contemplating about the surgery teams, between Mt Sinai and Weill Cornell Medical, both great choices and also exploring laparoscopic vs conventional colorectal surgery. I have done tons of research on pros and cons. I have to remove my rectum for sure but the GI said that at Weill they might be able (in future procedure) to do a J pouch. In any event, neither takes insurance which it is a whole new discussion for another time.
I feel exactly the same about the NG tube; I had a really bad experience with it and there is no way I am getting one.
Did the catheter bother you?
One of the known Diludid side effect is that it cut ones desire to eat or do anything but feel no pains. So I assume the NG tube was to put foods in your system to get it started.

I read your treat about the stoma and it is very helpful. I saw a web site posted by NYX that had sort of a pouch that you can insert a piece of hard plastic in front of the stoma bag?

Btw, were you given a choice where to place your stoma?
Sleeping at night with the stoma is another thing on my mind as I am having issues with my sleep cycle. I wonder why they don’t make the bags larger for the night time?
Thanks again
Best wishes
06-03-2010, 09:16 AM   #10
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Hi acg,

I'm not familiar with your procedure, but I am familiar with surgery and the need for a catheter. I had thoracic surgery to my lung last year which required catheterization and the insertion and removal of a chest tube. By far, the chest tube was the worst. It caused the most pain and required constant monitoring and pesky post-op surgeons bitching me out because I didn't like the pain "pump". I'd press it once when they were there bitching me out for not using it, within two minutes I would fall asleep. I used it maybe 3-4 times.

The chest tube was in for 2 days, and so was the catheter which was the foley type. Both were inserted while I was under general anesthesia, so there was no pain there. BUT if you have to have these things "re-inserted" after surgery because the come out, or you yank them out (some people do it with reflex), buddy THEN you're in trouble!

The catheter was not painful, it just created weird sensations when I had to pee. When they removed it, the nurse started counting "1-2-". I said "STOP! DON'T COUNT, JUST TAKE THE DAMN THING OUT WHEN YOU"RE READY!" She did as I asked, and it was not painful when she removed it either.

The trick is there, be sure you drink lots of liquids afterward (coffee worked well for me)because they only give you 12-24 hours to pee normally into the "hat", but your "pee feeler" gets lazy after surgery. If you don't pee, then they threaten you with putting the catheter back in while conscious. The nurse came in with that thing and a mean look on his face, ready to insert. I told him to put that damn thing down, give me two cups of coffee and a half-hour after that.

He did what I asked. You don't have to give in to their bullying or threats and warnings of impending "disaster". Technically, I didn't have to have the catheter re-inserted even if I didn't pee. I could have refused. We do have choices with health care procedures, especially if they are painful.

Also, check for surgeons who are skilled at Minimally Invasive Siurgery (MIS). That is available for complete proctocolectomy here in Cleveland at University Hospital. I had a similar form of thoracic surgery and the recovery time was reduced from a potential 5-6 weeks for open surgery to 2.5 weeks for my recovery with "VATS" (Video Assisted Thoracic Surgery). This was indeed from a second opinion.

Keep checking your options, and never forget that odds are usually in your favor to fully recover without complications.
06-03-2010, 09:21 AM   #11
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Actually the NG tube is to drain the contents of the stomach. It goes up through the nose and is not pleasant to have inserted when awake.

I'm not sure about the pouch where you can insert plastic - but I would like to see it.

I did visit the stoma nurse at Mt Sinai to be marked before my surgery. The surgeon did not mention it, but I knew about it from reading on forums like this one! I left the placement up to her - after discussing where I normally wear my belt line.

I have tested bags from all the 3 major suppliers and the filter on the Hollister is working best for me. I think it would be a hassle to switch to a larger bag at night and then back to the normal 12 inch in the morning. I slept from 11pm to 6:30am last night and last ate about 8:30pm yesterday. This sure beats the 2-4 times I was getting up before my ileostomy.
06-03-2010, 09:51 AM   #12
Nyx
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It wouldn't be that hard to change to a larger bag at night. I always change my bag before I go to bed anyway. Plus, I never have any activity overnight anyway. Very rarely....most of the time I wake up with the bag in the same condition as I put it on the night before. Clean and empty
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Crohn's Diagnosis: May 2006
Current meds: none
Surgeries: Colostomy, December 2009

"Never trust a fart." Jack Nicholson, The Bucket List

Oscar is awesome! Loving my life with my stoma (with a hint of poo)!!

06-03-2010, 04:13 PM   #13
acg101
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Ok guys, my second opinion re confirmed the need for surgery asap. He was just great in explaining the in and out of the situation. My current GI is considered as one of the best in the field and he and I, together, saved my colon for the past 16 years using any and all tools in the medical establishment. I tried eastern medicine, alternative diets but for the past 4 years the quality of life was not really there. So, somewhat anxiously, I am going to say good bye to my colon and rectum very soon and welcome my stoma to the next chapter in my life.
I am meeting with the surgery team next Wednesday to discuss the specifics. One of the things on my mind is being on Imuran for the past 10 years and Cimzia since November/
Joe – Yes, I had the NG tube up my nose and it’s not a good feeling that I wish to repeat. From what I am reading here, having the catheter is not so terrible, especially if they insert it while you sleep.
Regarding the bag, I don’t want to reinvent the wheel, but it would make sense to A. have a disposable, sturdy, not expensive option, and B. To have enough capacity to allow you to sleep a full night and to seat through a meeting without worrying that the bag will burst (again not too expensive)
Do you guys have to sleep on your backs?

Best wishes and thank you for all the support
06-03-2010, 05:42 PM   #14
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I never sleep on my back. I pretty much always sleep on my side, even the side with Oscar on it. He only gets a little squished...lol And like I've mentioned before, I don't have any activity overnight so don't worry about rolling over on a full bag or anything (another reason why I wear a pouch over my bag at night, so it doesn't flop all over...just in case).
06-03-2010, 08:27 PM   #15
acg101
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Thanks Cindy - you are always very inspiring with positive outlook.
best wishes
06-03-2010, 09:04 PM   #16
5 iron
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ACG I just went through that same thing this past month. I went and got the second opinion from a different surgeon and he was very good about talking about options and what we could do to get me fixed up. We eventually decided to take out my bad section of colon. That surgery was on May 5th and i am still recovering, it takes a good while to recover because from what i understand they basically take out your colon cut out the bad section and then place it back in your body, bad part about this is that then your body has to take the time to readjust your insides to make them go where they need to go. As far as the pain control, they had me on an epidural, so i had to have a catheter, and i didn't like it. its irritating to pee. not that it burns or anything but it feels like my bladder is getting bigger instead of emptying, maybe its just irritated from the catheter i don't know. If you want to know anything else let me know.
Mark you are freakin me out,they pull your whole colon out to cut a little piece out,my dr wants to cut out a 3in narrow spot its located about 7 in from my small intestine,i thought they do the video thing with robot arms not lay you open like a trout,i was told 3 to 5 days in the hosiptal and a week at home i be ready go,you know not mountain climbing but normal things I better go ask more questions. Steve 5 iron
06-04-2010, 08:28 AM   #17
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I tend to sleep on my back and roll to either side. Before my 1st surgery, I was a stomach sleeper, but could not do that when recovering. So that habit was broken.

Today I woke up to a pretty full bag (no balloning) - I think the clock said 5:30am. I rolled to my right side so the bed could support the weight and closed my eyes. Next time I looked it was 6:30am. Not so bad.

Last edited by CDDad; 06-04-2010 at 08:31 AM.
06-04-2010, 08:40 AM   #18
acg101
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I tend to sleep on my back and roll to either side. Before my 1st surgery, I was a stomach sleeper, but could not do that when recovering. So that habit was broken.

Today I woke up to a pretty full bag (no balloning) - I think the clock said 5:30am. I rolled to my right side so the bed could support the weight and closed my eyes. Next time I looked it was 6:30am. Not so bad.
That is a great progress joe to sleep the night. I am glad there is loght at the end of the tunnel.
Which ostomy system are you using now?

Can you pick up your kids yet?
Best wishes
06-04-2010, 10:07 AM   #19
CDDad
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I'm using the Hollister 2 piece, flextend flange, 12" drainable pouch with filter and lock n Roll.

I am able to pick up the kids now. The Ab muscles feel good and healed. I can use them to sit up, anything with no problem.
06-04-2010, 02:11 PM   #20
acg101
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Regarding the bag, does your insurance company limit how many you can order at one time?
If cost was not an issue, would you use a new bag every time?
best
06-04-2010, 02:43 PM   #21
acg101
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Mark you are freakin me out,they pull your whole colon out to cut a little piece out,my dr wants to cut out a 3in narrow spot its located about 7 in from my small intestine,i thought they do the video thing with robot arms not lay you open like a trout,i was told 3 to 5 days in the hosiptal and a week at home i be ready go,you know not mountain climbing but normal things I better go ask more questions. Steve 5 iron
Steve - Some times, depending on the specific hospital and Surgeon, one can ask to do a MIS or Minimally Invasive Surgery. If you had surgery in the past it’s more difficult to perform an MIS but check your options. As Mark stated above, it sounds aggressive but it is done with great success
Best Wishes
06-10-2010, 06:11 PM   #22
acg101
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So after lots of soul searching, listening and researching, I have a surgery date set to July 9th.
I am going to have a total procto collectomy performed partially laparoscopically (not the bottom part

I am having the surgery at Mt Sinai


I have a great support system at home and here with you guys, non the less I am nervous about the recovery, and learning to live with an Ostomy bag for the rest of my life.

Thanks for all your support

cddad - did you have two teams performing your surgery?
07-06-2010, 12:10 PM   #23
acg101
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Surgery time on Friday and I am getting nervous

What did you guys do to deal with the stress?
07-11-2010, 06:21 PM   #24
acg101
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hi everyone - I had my surgery Friday and all went well. I am in disconfort and will write next week when I get home
07-12-2010, 08:01 AM   #25
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Hi Dan,
I'm glad it went well. I look forward to hearing all about it.
07-12-2010, 08:08 AM   #26
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Glad to hear it went well. Post when you can..
07-12-2010, 09:34 PM   #27
acg101
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I am on my 4th day in the hospital. The surgery went well but it was more complicated that they thought. I did a Total proctocolectomy with ileostomy (to remove all of the colon, rectum, and anus). It was scheduled for 5 hours but it took 7.
I did it at Mount Sinai by two surgery teams, one Laparoscopic to remove the colon and the other to remove the bottom part. I chose these teams after tons of research and they are considered top notch surgeons with lots of experience, great ‘bed side manners’.
After the surgery I was moved to the recovery room for hour and rolled to my bed where my family and surgeon were waiting for me. I learned about the reasons it took 2 extra hours due to severe adhesions from years of inflammation and possible side effects of Remicade and Cimzia. I lost very small amount of blood but my blood count was so low after years of bleeding and I asked both my son and wife to donate blood for me for post surgery transfusions.
Prior to surgery I spoke with the surgeons about pain management and the made it very clear that they are against epidural but open for other combinations. I had problems in the past with Diludid but I thought it will work best for the intense post-op pain. They suggested Tramadol (powerful non-narcotic) and Fentanyl combo.
On Friday night I was in severe pains throughout the night and the next morning and despite the mega doses of Diludid it did not help. They ask me to seat on a chair and I tried despite the pain
On Saturday after the pain stayed at 10, I agreed to switch to their cocktail which reduced the pain from 10 to 7. I got up and walk and pushed this button as fast as I could.
Day 3 was much better but the Foley bothered me and the drain bothered me. The pain meds took the edge off but I was not a happy camper. I walked again and started semi –solid foods.
Today they removed the Foley and I was happy I could pee on my own.
Will probably go home in two days.
07-13-2010, 03:50 AM   #28
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I am on my 4th day in the hospital. The surgery went well but it was more complicated that they thought. I did a Total proctocolectomy with ileostomy (to remove all of the colon, rectum, and anus). It was scheduled for 5 hours but it took 7.
I did it at Mount Sinai by two surgery teams, one Laparoscopic to remove the colon and the other to remove the bottom part. I chose these teams after tons of research and they are considered top notch surgeons with lots of experience, great ‘bed side manners’.
After the surgery I was moved to the recovery room for hour and rolled to my bed where my family and surgeon were waiting for me. I learned about the reasons it took 2 extra hours due to severe adhesions from years of inflammation and possible side effects of Remicade and Cimzia. I lost very small amount of blood but my blood count was so low after years of bleeding and I asked both my son and wife to donate blood for me for post surgery transfusions.
Prior to surgery I spoke with the surgeons about pain management and the made it very clear that they are against epidural but open for other combinations. I had problems in the past with Diludid but I thought it will work best for the intense post-op pain. They suggested Tramadol (powerful non-narcotic) and Fentanyl combo.
On Friday night I was in severe pains throughout the night and the next morning and despite the mega doses of Diludid it did not help. They ask me to seat on a chair and I tried despite the pain
On Saturday after the pain stayed at 10, I agreed to switch to their cocktail which reduced the pain from 10 to 7. I got up and walk and pushed this button as fast as I could.
Day 3 was much better but the Foley bothered me and the drain bothered me. The pain meds took the edge off but I was not a happy camper. I walked again and started semi –solid foods.
Today they removed the Foley and I was happy I could pee on my own.
Will probably go home in two days.


I got a little emotional reading that because I had a surgery at 18 with a chance of being reconnected, but ended up with a colostomy for a year. I can literally feel what you're feeling since I've been through it. I spent 2 weeks post op in the hospital due to complications.

Damn dude good luck with everything.
07-13-2010, 04:00 PM   #29
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Hey Dan,
That's good news about going home in 2 days. Too bad about the pain!! Your story brings back my very recent surgery memories. I felt so much better the day after I got home. Now 3 months later it's just an unpleasant memory!

Keep feeling better!
07-13-2010, 09:00 PM   #30
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Hey Dan, so glad you are on the mend. Don't rush things, make sure you rest. Take it day by day, and happy thoughts. Hope you recover very speedy!
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