Well it is all set up after many doctor visits - colon and rectum are going

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schrek-chewbacca hunk
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Date Joined Jun 2005
Total Posts : 2666
   Posted 3/18/2009 5:50 PM (GMT -6)   
My surgery is scheduled on April 16. They are taking the colon laproscopically and doing the rectum as an open procedure.  I am petrified.  I had more doctor visits and planned and cancelled additional colonsocopies than I care to admit.  But finally my GI (who I love this guy) sent me to the head of colorectal surgery at Washington Hospital Center (instead of a general surgeon). 
My GI told them about my resistance to medications so hopfully they will take every measure.  The docs assistant advocated an epidural (SP?).  I have never had one and just heard it was for having babies?  Also, I have a foot disease in the bones (Charcot Disease), basically osteoporosis in the feet.  So they we a bit concerned about that.
I have heard this doc is great (Thanks NascaRon).  I am going to the same guy he went to.
Question about gas pain?  If you are on pain drugs (morphine-whatever) how do you have bad gas pain?
He said I would be in for anywhere from 5-10 days, but since I have trouble walking as is, I think I might be there closer to the 10.  I am nervous about going home after 5 days - what is everybodies experience here?
My GI, says it will be 3 months before I am back to normal, whatever that is.  I didn't ask that question becasue it sounds stupid.  I haven't been "normal" in over 10 years so I don't relate to that word.  Also with blockages, leaks(we have discussed that before), clothes adjustments (I think) - and stoma sound eruptions - what is normal?  I am being serious here -sorry and why would it take me three months to get there?
Withh all the docs I have seen, you would have thought I have had every question asnwered - yet I keep coming up with new ones - ah -the curious mind in overactive mode.
So, the countdown begins and the doc prescribed 3 xanax a day until D day.  Still nervous though.
Love to all here

Regular Member

Date Joined Jan 2008
Total Posts : 381
   Posted 3/18/2009 8:26 PM (GMT -6)   
I just had removal of my colon- second step will involve creation of pouch and removal of rectum- third step will involve connection

I had a lap procedure- they give the epidurals for the open surgery and that is good. I had one when I had babies and it works for pain. You won't feel anything

I was moved when you said about not being normal for 10 yrs. I haven't been felt normal for three years and now I have to find a NEW normal. Whatever that is.

I have at least 4 months before I can get the connect ( jpouch)
Are you getting a j pouch?
Right now I am home after 4 days in hospital- getting used to the BAG-- and dealing with pain control.
Jackie, 43
Pancolitis, DX October 06

Lexapro, Synthroid, Protonix,
Tapering prednisone from 40 mg

Surgery March 13th- Total Colectomy
Jpouch surgery to be done in 3 steps

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 3/18/2009 10:22 PM (GMT -6)   
Ok the gas pain, i dont know how it gets by those pain meds, but it does! Just make sure before surgery tha tyou have your dr write you a script for some gas-x, and take it as soon as you get gas, or go ahead and take it as a preemptive measure. I never thought of it until you said that just now as to how you could still feel it, lol.

I went home after 6 days, was gonna go at 5 but a random fever kept me in an extra day. When you go home you will just be a useless lump for a few days, lol. But a home health care nurse will come help you usually every day, and of course, you can call yoru ET anytime or yoru dr, or you can hop on here adn ask us! They will teach you how to do stuff while you are there though, and make sure that whoever will be stayign with you at home learns how to do stuff do.

Back to normal, hmmm i'm not exactly sure. I would say that what he means is until you have your energy back. You should not have to make any clothing changes, (unless you walked around in bikinis or belly shirts, lol) I didnt. For the first few weeks i just stuck to sweat pants, well actually shorts that were a few sizes too big. you should not have any blockages, thats not somethign that everyone has. just be careful to chew really well, and take it slow and stick to your low residue diet. You probaby will have a few leaks at first, that's just cause you are getting used to it. Wont take you long to get the hang of it though. the gas sounds and such from the stoma will calm down after a while.
Warning-if you didnt hear this from me already-when you wake up you will have a clear bag and the stuff that comes out of you for the first few days is going to be the most disgusting thing you have ever seen, its like this green stuff, and it is going to smell to high heaven, like death warmed over, lol. But after you start eating it will not be like that. It wont smell so bad or look so awful after the first three or four days.
And you will have a lot of gas the first ocuple of weeks, you can help that by takign the gas-x BEFORE you get gas. That and the lots of output will calm down.
Anyway, keep askign questions, that's good
im not gonna tell you to no be scared, that would just be silly of me. But i can tell you that you are gonna feel SOOO much better the MINUTE you wake up and that you are gonna be HEALTHY!!! YAY!!!
Good luck!

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 3/18/2009 10:23 PM (GMT -6)   
Oh-and if you should eat some red jello or drink some red gatorade, dont worry you arent' bleeding to death, lol. It turns your output bright red!

Veteran Member

Date Joined Jul 2007
Total Posts : 2765
   Posted 3/19/2009 5:53 AM (GMT -6)   

Everything is going to be fine. I had my colon and rectum removed with an open surgery and was out of the hospital in 4 days. I was shocked that I felt so good so quickly! Seven years with Crohn's had really done a number on me, and I didn't realize how sick I was until my proctocolectomy. I could tell right away that the disease was gone, and that was the best feeling in the world. I still feel giddy when I think about it! :-)

I've heard really good things about epidurals, so I would agree to that, and ask for a pain pump, so you can give yourself a dose of pain medicine as needed. Waiting for the nurse to give it to you can take up to an hour when they're really busy, so you'll definitely want the pump.

Bring Gas-X with you or ask the doctor to prescribe it in advance. It's normal to have trapped gas after surgery, and if you don't take Gas-X, it can be quite painful. The pain medicine will help with that, too.

Walking is important to help wake up the intestines, so do the best you can. I hear that chewing gum can help wake up them up, too, so that's something to consider bringing with you. As soon as you get output from your stoma, you'll be able to start eating and the gas pain will subside.

Don't let them take you off the IV fluids too soon. When your stoma first starts working, it is going to put out a lot of fluid at first. If you don't replenish those fluids, you can become dehydrated very quickly.

The output at first will be a greenish liquid, so don't be alarmed. That is just bile. As soon as you start eating some food, it will thicken up and look more normal. Since the job of the large intestine is to extract fluids, the consistency of the output will be soft, like oatmeal.

Another thing that is good to know is that the pouch they put on you after surgery is nothing like the pouches we use on a daily basis. The one you will have after surgery will be clear, and that is only so the doctor can check to see if you're getting any output. As soon as your stoma starts working, the Ostomy Nurse will bring you supplies and will put on a normal pouch that has a cloth covering, so you won't be able see through it.

Since you're a hairy guy, you'll want to bring a razor and some shaving cream with you, so you can shave the hair on your stomach where the wafer goes. I'm a blonde woman with invisible hairs on my belly, so they did not shave me before applying the wafer after surgery. I have to tell you, it was so painful to change the wafer the first time, because I was pulling out each little blonde hair on my belly one by one. I had to give myself a dose of pain medicine just to get through it!

Also, ask the nurse for some adhesive remover wipes. Those will come in very handy every time you remove the wafer.

When it comes to the 3 months recovery time, your surgeon is talking about your energy level. I was able to do a lot of things very soon after surgery, like go to the grocery store and visit family, but I would tire easily, since my body was using a lot of energy to heal from surgery. I could have gone back to work 8 weeks after surgery, but I chose to stay home another month just to get my full energy back.

It's good that you're asking us questions, because we've been there and can tell you things that the doctors probably don't think to tell you. I think it's better to be informed and prepared. But, in all honesty, your mind can make it much worse than it really is. So, try to relax and focus on the best part, which is how healthy you are soon going to be! :-)
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again.

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