Surgery in May... scared

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PaNWmom
New Member


Date Joined Mar 2008
Total Posts : 5
   Posted 4/15/2008 1:12 PM (GMT -6)   
Hi,
My situation is a little different... but I'm hoping you all can help me with some anxiety I'm having about my upcoming surgery.  I am having a partial colectomy (they are leaving a few inches of colon and reconnecting everything in the surgery).  I don't have UC or Crohns... but a form of Familial Adenomatous Polyposis.  The oncologist recommended I have this surgery and remove as much colon as I am willing to remove because I have as much as a 100% chance of getting colon cancer...and because my colon is very tortuous difficult to survey with colonoscopy.  In addition, it will help with my chronic constipation... so that will be a nice benefit.
 
Anyway... I'm literally phobic about surgery!  I'm having nightmares about it and keep wanting to cancel.  But with a 3-year-old daughter that needs me, I feel that I need to go through with it to be sure I don't get cancer.  My mom died at a very young age from colon cancer and I know too well what it is like to lose your mom. 
 
I'd love to hear your stories about your experiences having surgery.  And it doesn't have to be just the "good stuff"... I want to know what to expect so I can prepare myself.  I'm having an open surgery... so not laparoscopic.  It will be general anesthesia, but they are also putting in an epidural for the first couple of days after the surgery.  Has anyone had one of those?  I'm nervous about it. 
Also, the surgeon said I don't need to do a colon prep!  I was shocked.  Then when I met with his nurse to talk about details, she was surprised, too...and called him to be sure that is really what he said.  And yes, he said that preps would cause "liquid bacteria" that is more difficult to control than "solid bacteria" during the surgery.  So no colon prep for me.  I'm thrilled not to do the prep...but also nervous about this, too.  Has anyone else had the surgery without a colon prep?  I'm always SO constipated, I just can't imagine...
 
Any advice or info would be greatly appreciated!
Anne

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 4/15/2008 2:27 PM (GMT -6)   
There are quite a few FAPers at www.j-pouch.org but I think most of them have a jpouch. You might check that site for more info on what you can expect.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


ME!
Regular Member


Date Joined Aug 2007
Total Posts : 185
   Posted 4/15/2008 8:21 PM (GMT -6)   
Hi Anne!

The prep was awful so what a relief it should be to not have to drink that awful stuff and do the colon cleansing. My surgery was laparoscopic but I'll share my experience and you should be able to glean some advice.

The surgery was the hardest thing I've ever done in my life! I don't mean to scare you but I do mean to prepare you. That being said I'm 6 months out now and I can say it's one of the best things I've done for my health.

I was told I would be in the hospital around 6 days. But because my bowels didn't 'wake up' I ended up being in the hospital 11 days. When you have the surgery your bowels stop working and have to wake back up. They were afraid I had a blockage and did x-rays and then a Cat scan, but it was clear.

They wouldn't let me eat anything. I was only able to have ice chips and suck on hard candy. My advice on this, if your bowels are taking long to wake up and they aren't allowing you any nutrients then ask about a TPN. It's nutrients given thru the IV. I got very weak and was losing weight.

Then around 6am the morning of the 11th day I was in bed and my bowels just broke loose. I had no control. They got me unhooked from my IV pole and let me get in the shower and the poor nurse had to clean up my bed.

I had to eat a meal and see how I felt before they would release me. (Hospital food never tasted so good) You'll be on a low residue diet once released. My first meal home was: Roasted chicken, salad greens with dressing, cooked carrots, baked potato without the skin but with plenty of sour cream :), string beans and a dinner roll.

Everyone is different but I only had one accident after I got home. You might want to buy some Chucks to keep underneath you wherever you sit and on your bed.

I had bad spasming of my small intestines. The doctor said that sometimes people dx'd with IBS before the surgery have this. He gave me Symax which helped but he mentioned how stress effects the gut and to try and keep the stress down (yeah, right). Well, I have a perscription for Xanax so I thought I would try taking one with my meals and lo and behold that has helped tremendously. I've only had to use the Symax once after eating a sandwich with whole grain bread. I'm suppose to be able to eat whole grains by now but I guess my gut isn't listening to the doctor, so no whole grains for me.

I also take a stool softner because after about two weeks things seemed to have slowed down. I think my bowels are just slow, so I just take the stool softner for my own peace of mind. Maybe at some point I'll try not taking it and see how I do, but for now I do. I also take a good probiotics. After going thru this surgery the good bacteria in your gut is probably none existent.

I go out to eat with no problems. No worrying about making it to the bathroom. I thought that would be an issue but it hasn't with me. Depending on what I eat will depend on how thick or watery my stool is. I don't have a bag or j pouch. They hooked everything back up to my rectum because my pelvic floor functions were fine. Everything is quite normal now. I have at least one good bowel movement a day, sometimes more depending on what and how much I eat. But I use to go two weeks without a bowel movement, so one a day is a miracle for me.

Also, no one informed me that this surgery would probably throw my menstrual cycle off. I had my period the week before surgery which I was glad about because I didn't want to be on my period at the same time, but I started my period a few days after surgery so be sure and bring proper underwear and pads just in case. The hospital pads aren't comfortable.

The most painful part for me was they pump you full of CO2 to do the surgery. Well that gas has to go somewhere and if your bowels aren't working you can't get it out. They tell you to walk, walk, walk. Well walking never got it out for me it made it go further up under my ribcage and shoulder. VERY painful. Someone on the boards here mentioned to roll from side to side to try and move the gas. But if you aren't having lapo then this probably won't be an issue for you. Seriously, this was the most painful part, so if you don't have to deal with this AND you don't have to do the prep your surgery might go a lot smoother than most.

Take advantage of your pain pump.

It's also good to have someone who you know is going to be there the first night and next day. My husband went home after the surgery and the next day when I was coming out from anesthesia I was confused. Didn't know what day or time it was.

If you have any questions please ask.

Good luck!! And keep us posted :)

((HUGS))
Kim
Control is an illusion. The only control we have is our response to people and situations. - Kim Martin

Post Edited (ME!) : 4/15/2008 8:25:32 PM (GMT-6)


PaNWmom
New Member


Date Joined Mar 2008
Total Posts : 5
   Posted 4/20/2008 4:03 PM (GMT -6)   
Hi Kim,
Thank you so much for you reply.  It is good to hear other people's experiences...good and bad...so at least I can prepare myself and know what to expect.  I'm thrilled not to have to have a bowel prep... after having 4 colonoscopies in the last few months, I am thrilled not to have to drink that awful stuff again.  But at the same time, I'm nervous about the infection risk.  I've been severely constipated...to the point that laxatives don't even work half the time...and the thought of them cutting the colon out with it being so full frightens me.  I know I need to trust my doctor's judgment, but it still scares me.
 
Anyway, thanks again!
Anne

enpointe
Regular Member


Date Joined Nov 2006
Total Posts : 65
   Posted 4/21/2008 11:00 AM (GMT -6)   
Hi PaNWma, I had the same situation last year and the surgery was the best thing I could of done. I have had chronic constipation since I was 5 and it has been horrible, the many er visits and everything. I hope all goes well for you. enpointe

Ohio43
Regular Member


Date Joined Aug 2007
Total Posts : 212
   Posted 4/21/2008 6:02 PM (GMT -6)   
PaNWmom,

If you're concerned about infection, see if your doctor can give you an antibiotic a couple of days before your surgery. I've heard of doctors doing that.

If you have to go on TPN, don't be afraid of it. You will not feel hungry. I was given about 1600 calories a day and I certainly didn't miss food. I wish they would have given me fewer calories, but they wanted to keep me healthy. Just think about your daughter needing you and that should be reason enough get through your surgery. Just keep telling yourself there are better days ahead. Staying positive will help with your healing. It sounds like you're doing the right thing. It's always better to air on caution.

lasbutterfly
Regular Member


Date Joined Nov 2007
Total Posts : 281
   Posted 4/26/2008 1:23 PM (GMT -6)   
Kim, I had what sounds like almost the same experience as you; however I had an open colectomy (they tried laproscopic, but it didn't work). I was in the hospital for 4 days, got out for a day and came back thru the ER with uncontrollable vomitting green (bile) and bowel movements that wouldn't stop. One of the surgeons from my surgery was with me from 4:30 in the afternoon until almost 4 in the morning when I was able to go to a room. I too had a CT (it hurt like heck to be on a table after open surgery), because they thought that I may have a bowel obstruction. I had gas trapped inside me from the surgery, and my mom and husband were able to see it clearly with the dr. You're right, it is extremely painful. I was in surgery for 6 hours, and had lots of air pumped thru me. I was told to chew gum to help get rid of the gas, and drink ginger tea for the nausea. It didn't cure all, but it might have helped.

After ER, I stayed in the hospital another 6 days and got stronger. I was very nauseous and kept vomitting. They were near putting a NG tube down me, but didn't have to at the last moment as I luckily quit vomitting. When I was released, I could only eat 1/4 of a pancake. Keep in mind, I was a good eater.. Too good, I weighed 205 pounds. Now I eat nutritiously 6 small meals a day and weigh 130 pounds, have gone from a size 18 to a 4-6. It's been difficult to have work clothing that fits, because my body keeps changing; from August until now. Best, I can have a bowel movement on my own without pain or bloating! Before surgery, I couldn't go for over a month at a time. Fiber and laxatives didn't work at all, and I had my own little pharmacy.

My stomach is very tempermental from surgery. No raw veggies or fried foods for me. I can't tolerate them. Anne, I would have surgery again in a heartbeat though, it has changed my life for the best. I'm still working thru the body image thing, but for once in my life people are noticing me and can you believe they're actually jealous of my weight loss. They don't realize it was life threatening before surgery, and now I'm seeing a nutritionist every 3 weeks.

I am very thankful.
butterfly
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