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Update: Total proctocolectomy with perm ileostomy -- nine days ago

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Posted 11/17/2012 4:11 AM (GMT 0)
Hi everyone, I just wanted to report that I am home from the hospital finally after my surgery. I had a very successful surgery but the recovery was a bit slow in the hospital. I had very low blood pressure so they kept me in a few days longer.

The day after surgery I was a mess, nauseous, loopy, totally out of it, major gas pains, which they attributed mostly to the epidural, which apparently controls the pain, but for someone small like me, it can have bad side effects. Once they got me the correct nausea medicine and took out the epidural, I was much better.

So far, my main complaint, other than adjusting to having my intestine poke out of me and wearing my poo on my belly, is some days, I still have massive gas attacks. At the hospital, they didnt want to give me anything; wanted me to work through them by walking. But, even yesterday, I was bedridden most of the day with huge cramps - they hurt so bad i cant even walk. It passed today but I am now trying to eat really soft foods so it doesn't happen again. I am keeping a food journal to see what is triggering them.

Any suggestions? GasX? On a side note, my bum barely hurts at all which I guess is good. Although I know things can change at any time!

Wow, I can't believe I'm on the other side!
Debbie
Posted 11/17/2012 5:25 AM (GMT 0)
Yes- try Gas-X. It was a lifesaver for me after surgery. I had such bad gas pains that they sometimes made me cry, and Gas-X helped quite a bit. As the swelling in my small intestine went down after the first couple of months, and my body adapted, those gas pains went away. Now I only get them once in a while, but they don't hurt nearly as much as they did after surgery. I still keep Gas-X in my purse at all times though just in case.

Best wishes as you continue to heal!
Posted 11/17/2012 6:25 AM (GMT 0)
Early on you may find that the gasx will work better if you take it before you get gas. I would get up and take 2, take 2 a few hours later and so on.
But, for the first couple of weeks the bad gas is normal. Its probably too early for you to be able to figure out what the food triggers are.
Lay on your left side, or on your back and bicycle your legs, if you can stand it. If you have had a baby you know. What I'm talking about when you dotheir legs when they have gas. It may hurt you too much at this point though.
I hope your recovery keeps going well, minus the gas!
Posted 11/17/2012 11:13 AM (GMT 0)
From what I understand, Bean-O includes enzymes which combine with food to prevent gas before it happens (which is why you have to take it with your meals), while Gas-X helps the gas pass through once it's already there... So it might be good to have both and use them for different purposes. The Gas-X didn't seem to do much for my post-op gas pains personally, but other people swear by it. I'm going to try Bean-O next time I'm at the pharmacy.

BTW, the prescription narcotic pain-killers didn't do squat for that type of gas pain either, even when I doubled up on them.

Here's what seemed to help a bit with the gas pains the first couple weeks: 1) moving/walking around - try different positions, knees up toward the chest is good... changing positions will help the gas move through your system 2) gently rubbing in between incisions 3) heating pad on the tummy 4) laying on left side so stoma is higher (gas rises).

Yes, paying attention to food is also big for gas issues... watch things like dairy especially. No beans or carbonation, or other gas-forming foods. Some things will act as triggers early on, but you can reintroduce them later with no problem, so if you find a culprit, cut it out for a while and then try it again in a few weeks.

Honestly, the gas will stop being painful at all somewhere around the two or three week mark. So just try to be patient and ride it out... it will get better, I promise!
Posted 11/17/2012 11:59 AM (GMT 0)
     Hi Debbie!  Glad to hear you are recovering very well.  I never had gas pains post surgery, but then I am weird anyway, having situs inversus (all my organs are reversed).  Found out AFTER the surgery that I was the first patient with this oddity my surgeon ever operated on shocked .  He said, "No problem, I just stood on the opposite side of the operating table."  Makes sense..lol.

     My main problem post surgery was that the head resident told me I could eat two days post op....not a good idea especially with lemon cake on the menu.....mmmmmm yum.  Great going down, not so good coming up.  I then had to have that nasty ng tube stuck back down for a few more days sad .  The ng tube weaseled its way out two days later but then I had another set back where my blood pressure dropped too...down to 70/40, temp of 105 and pulse of 150.  The aide doing night rounds discovered this.  She actually woke me up!  The NERVE!  All I wanted was to sleep.  I suppose if they let me do that, I would have never woke up the next morning.  Well, all heck broke loose...ct scans, IV's with antibiotics, etc...The next morning, I was fine!  My surgeon said he was called at 2 am and ordered all tests.  Apparently I gave them all a scare.  Till this day, they never found out what was wrong because all the tests came back fine.  But, that added a few more days to my hospitalization.  So, I was in a total of eleven days.  I had a long recovery, but I was 63 at time of surgery, suffered for 12 yrs with UP and prednisone dependent for two years straight with other health issues.

     Happy to report, here it is 2 yrs post op...I am now 66 and feel like 36 except for the osteoporosis which was a gift from prednisone.  I only take 1 pill a day for my well controlled BP.  Before surgery, I took 17-25 pills daily plus rectal meds...ugh!  Our youngest daughter FINALLY got married this past Sept 29th at age 35 (she's only known the guy since kindergarten, first marriage for both and neither have kids) and I danced my pittoooties off at the wedding yeah !

     Sorry this is so long...but I am sooooo happy for you.  I pray for your speedy recovery and many, many healthy years ahead.  BTW...I also have a "bag".  No problem!

Posted 11/18/2012 3:08 AM (GMT 0)
Congradulations Debbie.....it's been 10 days since my surgery and I've been home for 4 days. We had the same surgery but I am fortunate (so far) to have no gas problems other than what gets into my bag.
My pain is not too bad but I am very uncomfortable in the anal area from the closure. It feels completely bruised and sitting without 12 inches of padding is out of the question. I'm still on the Surgical Soft diet so I am playing it really safe for now with no cheating but everyday I get more of an appetite so I hope when I see my surgeon next week, she gives me the go ahead to start re-introducing stuff a little at a time. Have you done your own bag change at home yet ? I've done 2 but always in front of the Home Health care nurse. So far so good. I'm currently using the 1 piece Hollister. Still kind of scared to go it alone on the bag change.

Good luck to both of us. I know I have to be patient and let nature do it's thing. Like you, I can't hardly believe I'm on the other side of this too.
Posted 11/18/2012 9:38 PM (GMT 0)
Congrats -- glad to hear that the surgery went well, and I hope you get some relief soon from the gas pains.
Posted 11/19/2012 7:31 PM (GMT 0)
Hi everyone, thanks for your support. My gas is a bit better. I have beano and gasx at home but haven't tried them yet, just trying to move more. On Wednesday, it will be two weeks post surgery and I think I'm doing pretty well.

I have to admit I am way more grossed out by my stoma than I originally anticipated. It's just plain weird to me. I'm trying to get past the physical differences in my body and how I now have to care for myself but it's harder than I thought.

Desetsun01, I have changed my bag twice by myself, but it was very stressful. The first time I had to because it leaked, so I wasn't at all prepared. The second time I did it right in the morning right after a shower, which was still very stressful, but a bit better. I felt like I was on a timer, my heart was beating, but I did it.

Anyway, I know things will get better. I don't have an appt with my ostomy nurse until the 28th at which point I hope we look at different (not see through) products and undergarments.

Debbie
Posted 11/26/2012 2:17 AM (GMT 0)
Dietcoke-

Gratz on the sugery!

Something that really helped me a few weeks after surgery - an ice cold PEPSI! yeah

Keep on healin'!
jimmy
Posted 11/26/2012 7:15 AM (GMT 0)
If you go ahead and get some sets of things you need for a change ready, so that all you have to do is just grab a box and its all there, it makes it much less stressful!
Posted 11/28/2012 4:26 PM (GMT 0)
Debbie......Just read your thread on the bag changes.  Good for you for going it alone.  I have a home health care nurse coming to the house 2 days a week and I don't do any bag changes until she comes to supervise.  When she comes tomorrow though, I am going to have her stay out of the room while I do it myself and then she can assess the end result.  God, I feel like such a wimp with these bag changes.  I also have a teeny tiny bit of skin irritation but now have the skin barrier wipes and the statin powder so things should be good.  Empying the bag is no problem whatsoever.  I really like using the squirt bottle to clean out the end part of the bag and I am sure I will use this method from here on out.

My incisions are healing very well also.  By this time next year, I'll need a magnifying glass to see the scars !  Yesterday was a big first.....I drove myself to Target and did a little Christmas shopping.  I was there for over and hour and did great, but man oh man was I tired.  Still, it felt so good to get my independence back !

about the only thing I am really dealing with post surgery is, for lack of a better way to describe it,  something like mild postpartum depression after having a baby.  I just feel kind of alone and sullen.  Maybe its just because everything has slowed down in my life and I have the urge to just jump into living again after years of being a slave to the UC.  Or maybe its just the chemical changes the body goes thru post surgery.  Or maybe, its just the darn cold weather and winter setting in.  Whatever, I know I have to be grateful for how well I'm doing and work at being patient thru the process. 

Geez, when you think about it, its only been 3 weeks since surgery.  Man, I gotta get a grip !

Posted 11/28/2012 5:07 PM (GMT 0)
     Sounds like you are doing great!  Don't beat yourself up.  You just had major surgery and no one expects you to be doing back flips..lol.

     I had my surgery at age 63, I noticed you are 61.  Did your surgeon require you to undergo a stress echocardiogram before having the surgery?  Maybe because I was sooooo sick for so long and prednisone dependent for two years straight, but my surgeon would not touch me if I didn't pass that stress echo.  Thankfully, I did and I had to got through it twice because I have situs inversus (all my organs are reversed) and the first technician running the test was not familiar with patients with that phenomenon and screwed up the test rolleyes .  When I went in for retesting, I insisted they have someone with experience, because, hey, that is NOT a pleasant test to go through at my age..lol.

     Do you have anyone at home to help you with your changes?  I know it is somewhat overwhelming at first.  I can remember looking at that bag for the first time when I woke up from surgery and thinking..."Holy crap, how am I ever going to be able to cope with this?"  I did have a nurse come twice a week for about a month, but my husband is here and he insists on helping me with my changes even though I am very adept at doing it myself.  Give it time and it becomes second nature.  Remember, baby steps.  I had my surgery 2 1/2 yrs ago and it was the BEST decision regarding my health I ever made.  God bless.

Posted 11/29/2012 1:14 AM (GMT 0)
It was never even suggested to me by my surgeon to have the stress echogardiogram done. I'd had an echo done a few years ago because I have a heart murmur but nothing serious was found. I was taken off prednisone 3 months before the surgery and taken off of Humira and Imuran one month before. All of that was in my favor and the surgeon was pleased I was able to do that.

No one at home helps me with the bag changes, but I have a couple of wonderful home health care nurses that come twice a week and that's when the bag gets changes.

I did so much research in the 5 months before surgery that I really felt I had a good idea of what was ahead of me. Still, nothing like the real thing ! Like you, and even though its early in the process, I know without a doubt that this was the best decision I could have made. Once I get my strength back and my insides are done healing, well........look out world ! In the mean time......baby steps.
Posted 11/29/2012 2:29 AM (GMT 0)
Debbie...you are doing AWESOME! Slow and steady. Each week you will see that you are now doing something different you weren't doing before.

It is truly life changing in many ways but to now have predictability and you are back in control instead of it controlling you is really so freeing in many ways. My husband had the same surgery coming up on 2 years soon and no regrets. (Yes there is one....he should have done it sooner.)
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