Surgery just sched for Oct 10

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KVail
Regular Member


Date Joined Aug 2011
Total Posts : 22
   Posted 9/2/2011 10:18 PM (GMT -6)   
Hi all-
After getting another opinion today, I decided to book the surgery for Oct. 10.  Dr will remove all of colon and attach the small intestine to the rectum (hopefully!).  Also, hopefully, will do this via lathroscope.  I'm the one who is allergic to painkillers, and I'm really concerned.  I have tolerated an epidural in the past, though, and I can take Advil.
So...I have a lot to learn.  What tips would you offer a newbie?  For example, somewhere on here I read about a stretchy "belt", maybe a maternity support, that helped. 
All advice welcome, I'm feeling pretty lost/confused right now.
Thanks!

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 9/3/2011 7:11 PM (GMT -6)   
Congrats on taking this big, scary step! It is very overwhelming, but we're here to help.

Are you having the colon attached to the rectum in the same surgery or having more surgeries? If it's the same surgery, then you wouldn't have an ostomy bag at all, right? It's just helpful to know what surgery before giving advice.

I think what you're referring to is a belly band, which some people wear to give some extra support for an ostomy bag.

Some of the first advice that people on this list like to give is "walk, walk, walk" and then "chew, chew, chew." After surgery, as soon as you can walk, the nurses will probably be making you walk, and you probably won't feel like it and will be amazed at how hard it is, but just do it..... it gets easier fairly quickly and it makes you feel a LOT better. You'll also be happier if you have your own slippers to walk in and robe to wear.

And chew your food really well at first to avoid any kinds of blockages etc. At first you won't be able to eat, and your output will be green and slimy and smelly, but it gets better.

With lapro surgery the gas goes into your shoulder and it's a weird sensation for a few days afterward .... just unexpected. They also gave me this tube I had to blow into to make a ping pong ball go up and down.... it was to exercise my lungs after the anesthesia (you're under longer w/a lapro surgery, but it's worth it, especially w/your allergy) and it was good to do that.

Those are a few thoughts, others can add more. Feel free to ask more specific questions as they occur to 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

Alibee
Regular Member


Date Joined Oct 2010
Total Posts : 286
   Posted 9/4/2011 11:24 AM (GMT -6)   
Hi KVail,
I also have colonic inertia - and I am going to see another surgeon on the 9th for a second opinion. I also have a disc to bring with me with all of my xrays and tests on it.

I saw that you said you got a second opinion - and I was wondering what that appointment was like? It seems strange to have gone through all of the testing and everything with one doctor, and then all of a sudden go see a new doctor. Did you have to explain your whole history again and did they have to ask you a ton of questions or do other tests...or were they able to just look at your disc and your medical records and give you their opinion?

I have already been offered the option of surgery at one place, but if I meet with this other surgeon and she offers to do the surgery, and I feel comfortable with her, I'd have the surgery done there most likely. My appointment is coming up soon and I am just trying to get an idea of what a "second opinion" appointment is like, so maybe you can give me some advice!

KVail
Regular Member


Date Joined Aug 2011
Total Posts : 22
   Posted 9/4/2011 6:14 PM (GMT -6)   
For what it's worth....the seconde opinion surgeon saw my disc and all of the physical papers.  From the Sitzmark test, I guess I have a "classic" case.  There was a little bit of time where I gave him a brief history, and then he spent about 1/2 hour going over the surgery and the risks and percentages.  I'm really freaked out about the (granted, tiny) risk of ending up with some kind of outside pouch.  I know a lot of people on forums really enjoy their lives afterwards, even with a pouch, but I just really, really can't get beyond that.  I'm going to ask both Dr.s again tomorrow about how sure they can be that that won't happen.  I also keep hoping that there is some kind of diet/medicine/something that will make this unecessary, although I've tried SO many things, I think I've pretty much exhausted any options.
I'm going to keep asking questions and keep reading about this so I can go in super informed.  I'm scheduled for Oct 10th, and I'm going to get as many opinions as I think I need.  I've actually seen several doctors for this problem over the past couple of years, and not one took it seriously (they didn't believe that I would go weeks without a bm).  Sooo....I'm just really confused, concerned and scared.
Go get that opinion, and definitely trust your insticts if you are more comfortable with one dr over another.
Good luck, keep me posted!
K

Alibee
Regular Member


Date Joined Oct 2010
Total Posts : 286
   Posted 9/5/2011 10:34 AM (GMT -6)   
Thanks so much K,

My first surgeon also went over the risks and when my mom asked about the chances of getting a bag, he said they have to warn everyone but the risk is EXTREMELY small, especially for this type of surgery, when the colon (aside from not working) is otherwise healthy and disease free. He also said that even if you did have some kind of rare complication, having a bag would only be very temporary - until they could go back in and fix whatever the issue was.

I know you are nervous - but this website will give you a wealth of information so you feel totally informed. If you search for any of the "total colectomy" threads, you can read other people's stories who have had the surgery.

And I know exactly what you mean about exhausting your options...I have tried EVERYTHING. If only I had a dollar for every time someone said to me, "have you tried _____?" It gets to a point where you are pretty much just treating your symptoms instead of fixing the problem...and I am ready to fix the problem. Surgery is scary, but every time I think about living the rest of my life feeling like this every day, that's even scarier to me.

You're doing a great job making sure you are informed and prepared - any questions you think of, make sure to ask them on here - you'll get lots of great answers. I'll definitely keep you posted on how my appointment goes on Friday, thanks for the help!

-Ali

KVail
Regular Member


Date Joined Aug 2011
Total Posts : 22
   Posted 9/6/2011 9:50 PM (GMT -6)   
Ali, you were so helpful to me in that last post!  For years, and for many different things, I've told other people that they should treat the root cause, not the symptoms--yet didn't even think of that for myself with this!  As soon as I read your post, I was able to accept this and start getting ready for the surgery.  You really gave me comfort and clarity--and so has the rest of this board.  Thank you!

Jackie_0mg
Regular Member


Date Joined Sep 2011
Total Posts : 427
   Posted 9/9/2011 10:38 PM (GMT -6)   
omg! we are in the same boat surgery wise im not allergic to pain killeers but im getting the same sugery october 10 . What ive been doing was mentally preparing and i do yoga and someone told me that was a good thing im doing because it strengths my core and abdomen so mayb i will heal faster
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