Hi, everyone!  I am in a hospital room, recovering from my takedown with Dr. Remzi. I had VERY TOUGH night after my surgery .. I was dry-heaving all night, about every ten minutes very aggressively.  And you guessed it, with the abdomen being worked on for the takedown and a gall bladder  I am sure there were a few tears.  OUCH! They put a new NG tube in (this is really fun! - yikes!) the next morning that helped.

 

I am at my second full day after surgery and happy to say without any leaking, casually sat on the toi toi and my first new bowel movements!    The new plumbing seems to have worked!

 

Now, here are some tips before any of our surgeries as far as I"m concerned.  You do NOT want nausea after these surgeries!  1.  Be sure to tell the anesthesiologist if you feel nausea might be an issue. 2 Tell the surgeon to leave the NG tube in after surgery for a day or so -- MUCH better than having it put in when you are awake, and 3.  I am pretty sure I had a very bad caffeine withdrawal headache that caused much of the vomiting!  Be sure to wean off caffeine before a surgery.  They had to literally give me coffee the day after my surgery and the nurses mentioned that withdrawal headaches occur very often!

 

Well, on my way to resting and recovering further!  

Original Post

Hey KNKLHEAD, when you are feeling better i have so many questions for you. I have decided to have my revision/redo with Remzi on October 19th. Nervous but very excited to have this and move on and start living again. Been dealing with all these procedures and repair attempts from Shen and my other surgeon. I asked them to try so not bagging on them. I just feel Remzi will make this pouch right this time.

Originally Posted by Pouchomarx:

Hey KNKLHEAD, when you are feeling better i have so many questions for you. I have decided to have my revision/redo with Remzi on October 19th. Nervous but very excited to have this and move on and start living again. Been dealing with all these procedures and repair attempts from Shen and my other surgeon. I asked them to try so not bagging on them. I just feel Remzi will make this pouch right this time.

Sure Poucho.. happy to chat with you. I am very optimistic, but still guarded a bit.  I was happy the way I felt with the ostomy, but because I had a chance to have the best surgeon in the world help me, I felt as though I had to give it a go.  I think I will be released tomorrow.

Thats how I am. No issues with the ileostomy itself, I have a good stoma and no skin issues, BUT.... I hate this thing. I already had a body image issue and this just makes it worse. When I had my jpouch the first time, i dealt with cuffitis for the first few months but for the most part is worked pretty well, even with the sinus/fistula. It only had to be diverted when a tip of j leak caused a spinal infection. I'm still nervous about the surgery due to what happened to me after the 1st one, but I'm soooo confident in Remzi and I feel its going to be a good thing this time around. I just hope all goes well and i can get back to work at least very light duty for a few hours a day after 4-5 weeks. Remzi stated a 6-8 week recovery but if all goes well I could be back to doing light duty in 4. I have a desk job for the most part, so nothing strenuous or very physical.

Originally Posted by Jeffsmom:

Ok, this is idiot question day!  Why do they shove that tube up your nose and I to your stomach?  What is it supposed to do?  I don't remember my son having it.  I do t remember me having it either and I've been in a drug induced coma.

Ah, not a stupid question!  It is likely that almost every time we have surgery, right after they put us to sleep they put in an NG tube (nasal-gastic -- nose and stomach).  This so we don't choke or throw up during surgery, etc.  It also sucks out whatever is in the stomach.  In many cases, after surgery, they leave the tube in and it is removed after a while by the surgeon.  In my case, they removed the NG tube before I was awake, and it just so happens in this case I was nauseous.  If the tube was still in, it would have helped my from dry heaves/throwing up.   I hope that helps!

I had an NG tube for nearly a week post op following my 1-step. The surgeon wanted to pull it at the first sign of bowel sounds, but I asked him to leave it in place, but just clamped for 24 hours before removing it. I wanted to be sure I tolerated it because I did not want to have it put back later. 

 

Then once that day passed, the nurses were being slow about following the order, so I just pulled it myself after a few hours went by. They weren't too happy with me, but that is what they get when they have a surgical nurse as a patient!!

 

Any time you have intestinal surgery that is prolonged they put an NG tube in while you are out. Surgeons each have their own protocols about whether it stays in after you are awake. 

 

Jan

Yeah, I'm sure there'd always be an NG tube for most all of our surgeries, and I think intubation is the same thing.  It isn't a breathing tube, goes in the stomach and out the nose to suction out stuff in the belly.  I honestly pulled mine out by mistake! And luckily had no further nausea issue.   I was pushing myself up to get out of bed and had my hand on it, holding it down while I stood and it popped out.  I didn't even know it until the RN saw it on the floor!

 

 

Looks like I'll get out of CC today, but have high blood pressure.  I believe the fluids they continue to pour in raise it.  Last hospital stay they  gave me meds for blood pressure and I immediately had low BP when I got home.  The doctor allowed me to be taken off the fluids today and enjoyed cream of wheat this morning!  Yummy!

 

I have pretty loose stools for now, but if I recall correctly, it takes a while to firm them up.  

Good info.  Makes sense that an NG tube is different than a breathing tube!

 

I got home from the hospital last night, doing pretty well.  Yep, the blood pressure is back to normal (I swear it's the constant fluid drip in the hospital!) and feeling pretty good.  The worst part is the soreness around my mid section from the old stoma, makes it hurt when I cough, or sneeze, etc.  Otherwise, I'm doing pretty well. 

 

As far as output, not too much leakage at this time and went to the bathroom, without feeling an urgent need, and was able to empty the pouch on command, at least this time!  

Update, 6 days post takedown:  Doing quite well, just soreness around belly, but getting much better.  I don't have my typically voracious appetite yet, but eating carefully.  I have no urgency (wow, hope this continues) and go to the bathroom when I want with success.  I woke up once last night felt a slight leak at 4:30.  When I walk for distances I do not leak hardly at all, and no pain in my butt whatsoever -- this is much different that my prior two takedowns!

 

I am not going to be foolish enough to think that I can "jinx" myself for speaking honestly about how well I feel, but I will remain a bit guarded.  (However, my lawn tractor is calling my name.)    When I eat I do feel a bit of pressure in the midsection, but it seems to be moving along okay.  I reconnected my good ole' CoCo bidet (truly a well made piece of equipment -- still works great after probably thousands of uses!)

 

Try to keep you updated.

Thanks, Poucho .. again, trying to be cautious, but this morning went to the restroom at 8:00 or so, waited until 3:00 PM, decided to give it a go, without urgency and no problems, emptied j pouch.  Easy!  But I'm not going too crazy about success yet, since it's steady as she goes!

 

I know what your history is, Poucho .. we both seem to have been on the same track!  

 

Hey, Pouch, I'll look for a PM.

 

Yesterday was good, I counted 8 times to the BR, and seems like around 4:30-5:00 AM is my pouch "wake up call."   Never terribly urgent, only when I feel pressure has built.  Leaking a bit but realize this is work in process.  All is going well.  Mowed the lawn yesterday against my wife's objection (rider mower, easy!)  I know I should call it "tired," but still feeling a bit "lazy,"  -- looking forward to getting more energy back.

 

Having said all that, I'm doing very well!  Thank you!

 

Hey Knkl,

 

Congrats on your reversal!!!. It is awesome to hear you are doing well. Yourself, poucho, and I have seemed to walk a similar path so far but hopefully we are all headed in the right direction.

 

I am 4 months out from my second take down and other than a bad day every now and then, i am doing pretty well. The dreaded A$$ melt shows up sometimes and some cramping. Otherwise, i have little or no complaints.

 

Keep me up to date on how you are progressing. Hopefully, we have some good luck this time.

 

Talk soon,

 

Derek

Wow, you sound great! take it slowwwwwwly. NO tractors for at  least a month...stop being and over achiever and be a patient patient for  a while.

Do not overdo things until you are healed.

Be well, the tractor will wait for you if he really, truely loves you!

Sharon 

Thanks, Derek, good to hear from you!  And you sound like my wife, Sharon!

 

I know it sounds like I'm Superman, but I'm faking it a bit!  I do often need a good hour nap at some point during the day, and my sleep schedule is a bit messed up .. can't get to sleep as usual.  But if I recall prior surgeries, it took me a while.  I tried Ambian, and that scared the heck out of me!  Yes, it worked, but not a fan of what it seemed to do to my brain, sleeping/dreaming!  

 

For me, trying to get back on the horse keeps me moving forward.  I'll try to get back to work (office) on Monday, with the understanding that I'm going to need a bit more flexibility than usual for rest and -- yes -- bathroom breaks!

 

 

 

 

 

Hey KNKLHEAD, i know the time between surgeries is typically 3 months , but is it ok to wait like 6 months between? I'm having first one on October 19th, and i have so much going on with my daughters cheer competitions and moving into new building for work in early spring. I want to get rid of this bag asap, but cant afford the downtime at that point.

Pouch, you can wait as long as you want between surgeries.  Jeff was put back on the ostomy in March.  He won't be put back together until Oct/nov at the earliest.  He might even have to wait until the first of the year.  We will find out Monday I think when we meet with the surgeon.  As far as driving, Jeff was told 6 weeks and the first time he drove, he thought he was going to die.  But he was cut completely open.  The first two surgeries which were done lap, he was still told six weeks I guess as long as you are off narcotics, you can do what you want, but why risk it.  You have come through a lot.

 

cuz of my job, Remzi said i might be able to come back to work light duty in 4-5 weeks. my job does not allow for someone to just step in while i am out, there are only 3 of us in my dept and its going to be a huge burden on my 2 guys to handle things. I can do some things from home on computer but better if i show up at least for a few hours a day

I was driving pretty quickly.  After Step 1 (of 2) I was driving locally about 2 weeks post-surgery so about a week after I got out of the hospital.  However I did not take any narcotics after leaving the hospital (actually after 2 days...made me sick so opted for Tylenol!).  Basically my surgeon said when I could turn to look at my blind spots I was OK to drive.  After takedown it was even quicker...can't remember exactly but I know I drove myself to my follow-up appointment over an hour away less than 2 weeks post-takedown.  Again...no narcotics once I left the hospital (was there for only 3 days for takedown).

 

Vicki

I kept my baggie for a full year before having the takedown because it worked best for my work schedule.  My summers were opportune for surgery/recovery because I was teaching.  Looking back.....more than 10 years ago......I'm really glad I waited.  My J-pouch was well healed and I had no issues transitioning to a connected system.  I had no problem accepting the ileostomy because I finally felt so healthy compared to the years I lived with ulcerative colitis.  In fact, if I needed to have a permanent ileostomy, I'd have no problem with that, either.  Best wishes! 

Yeah, I think you can wait as long as you want from redo step 1 to take down.  For you, it sounds like you could use a good break .. and it is likely you'll feel better and better.  Since you take pain meds now, I hope that after a redo you feel well enough to get off them.  Obviously, if you need them, you need them! 

 

I think I was good to drive three weeks or so from take down, but don't recall it being an issue, and after 10 days out from takedown, no pain meds, I'm sure I will have no issues driving.  

 

 

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