Anyone have colectomy without a bag? Surgery soon, need advice!

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

jennatoga
New Member


Date Joined Jan 2008
Total Posts : 14
   Posted 1/15/2008 8:15 AM (GMT -6)   
I am scheduled for a subtotal colectomy and have been told that chances are I won't need to have a bag, as they are planning to attach my small intestine to my rectum. This forum has been a Godsend for me to assuage most of my fears, but I am noticing a majority of the people on here have gotten a colostomy or an ileostomy. I am interested in hearing from people without a bag, who have had the reattachment they are planning on doing to me. I have gone through all the testing, especially the anal rectal manometry, so I know my rectum works like a champ, ( :-) ) but I am still wondering how long it'll be before I have a "regular" bowel movement, or at least, before I can go out and not worry about getting to a bathroom. Also, I've heard that some people lose weight after the surgery, and some have gained. Just wondering what the average is. They are planning on doing the surgery laproscopically, but of course there is always the chance of an open. Anyone with any experience in this, could you please tell me about your surgery/recovery? I'd love to hear from real people, not the stuff my doctor has to tell me. I thank you all in advance for your help, and thanks to all who have helped me already on this board!!
 
By the way, I am a 33 year old woman in good health otherwise.
 
Thank you!!

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 1/15/2008 1:51 PM (GMT -6)   
I just wanted to chime in and say Welcome! As you have probably already read, I do have an ileostomy due to CD. What is the reason for your Subtotal Colectomy, if you don't mind my asking?

I'm sure others will be along shortly to answer your questions.. have you checked out the other threads?

Best of luck to you and good hearing from you. Answers to your questions should help to put your mind at ease.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


jennatoga
New Member


Date Joined Jan 2008
Total Posts : 14
   Posted 1/15/2008 3:05 PM (GMT -6)   
Thank you for the welcome! Everyone here seems so nice and supportive, it it such a wonderful resource for people like me who are a bit anxious, to say the least! I am having the surgery because my cecum has distended to the size of a football and my entire large intestine is twisted do out of shape that chronic constipation is the understatement of the year! I was going to the bathroom about once or twice a month, coupled with agonizing pain and constant bloating and fatigue. It has taken years to diagnose, because I had a bunch of different symptoms that no one put together until recently. I had the pain and fatigue as I mentioned, plus constant urination due to my cecum falling down and pressing against my bladder, (three urologists missed that), pain during intercourse, (two gynecologists missed that, same reason, that darn cecum!), as well as a sudden weight gain (40 lbs over a year) that my doctor chalked up to being newly married! Also, my stomach is tipped strangely, preventing food from emptying totally, so So I've been suffering until after an emergency room visit I went to a GI specialist and he ordered a battery of tests. Finally I have answers! But now I'm just worried about the outcome, whether I will have some pain relief after all this time. Hopefully it'll all be worth it! I just need patience. And all you wonderful people for support. Thank you again, all of you!

ME!
Regular Member


Date Joined Aug 2007
Total Posts : 185
   Posted 1/15/2008 5:34 PM (GMT -6)   
Jennatoga,

I had the exact surgery you are going to have back in Oct 07.

I was dx'd with colon inertia. I took the sitz marker test and after 5 days 23 out of the 24 markers were left in my colon.

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 3 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.

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.

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.

I'm in Georgia.

((KIM))

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 1/15/2008 6:07 PM (GMT -6)   
ME said.....
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.

 
The only advice I can give for this pain is to lay flat, and roll slowly from one side to the other side to try to move the gas thru the body....   an open heart patient told me this hint when I had my surgery.  It helped me.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


Mom2sophia
Regular Member


Date Joined Aug 2007
Total Posts : 262
   Posted 1/15/2008 6:59 PM (GMT -6)   
I am do to have this surgery in March and I am as nervous as you are.  My doc is leaving some of the sigmoid in...and assured me (not promised me) that I would not have a bag.  He is putting a nasogastric tube in that goes down to my stomach to let all the air out...it will be put in while I am under and take out most likely the day after.  I am actually relieved about this, as I think it will help with the discomfort and bloating. 
 
Did you have a Sitz Marker?  What did it show and where were they left?
 
I wish you all the best?

jennatoga
New Member


Date Joined Jan 2008
Total Posts : 14
   Posted 1/16/2008 7:03 AM (GMT -6)   
Kim- you are wonderful! Thank you for sharing- I actually told my husband to check out this thread and see the other peoples experiences too! Thank you everyone for the advice about the CO2. I actually had a tumor removed (along with my right ovary) in 2000 so I know about that nasty gas pain! Mine settled around my shoulders and killed me. A heating pad worked wonders for me. As for the sitz marker test, believe it or not, I never had it! I had a barium fluroscopy, which showed transit time of 120 hrs, a nasogastric esophageal manometry, which showed the lower portion of my esophagus was paralyzed due to the excess acid formed from the food left in my stomach , a colonoscopy, which showed the ptotic cecum and the twisted large intestine, and the lovely anal rectal manometry. I also tried 4 different drugs to help with the pain, but obviously they did nothing but turn me into a zombie and deplete my wallet! I will have my husband and my mom there running tag team so I will have someone there as much as they'll let me. I'm sure it was horrible to be so disoriented with no one there! Kim, did you have the nasogastric tube? I'm kind of scared about this as the esophageal test was the worst one for me to tolerate. I have a horrible gag reflex and thought it was torture to have it put in as well as removed. Thank you also for the heads up about my period- I was actually thinking about that recently, and am already trying to work my birth control to adjust the week that I have it. Luckily, due to this awesoem BC (nuvaring) I only have it for a day or two!

ME!
Regular Member


Date Joined Aug 2007
Total Posts : 185
   Posted 1/16/2008 7:29 AM (GMT -6)   
jennatoga,

You're so welcome. I'm glad my pain can be put to some good use :)

I didn't have the nasogastric tube but a friend of mine who had her surgery a month before me did. From her experience I would suggest you tell them to use the smallest tube they can.

It sounds like there is a lot going on all throughout your digestive process. I have MS which is probably the cause of my colon shutting down, but my esophagus, stomach and small intestines seem to function fine, so far.

I'm sure you and your doctor have discussed treatments for the other problem areas after your colon is removed.

We would love to hear how things go for you, so please keep us posted on your progress. Will send up prayers for your peace of mind and strength during this time.

((HUGS))
Kim

TGandJsMom
Regular Member


Date Joined Sep 2006
Total Posts : 41
   Posted 1/16/2008 5:45 PM (GMT -6)   
Hey! Congrats on finding some answers, and this place. It was a God-send for me too before my TC.
I had a total colectomy with ilieo-anal anastemosis in August of 2006 and I have never been happier. The surgery experience was nightmarish at times, but more because my body was so unhealthy going in that from any real defect on the part of the doctors. I was lucky enough to end up without a permanent bag and now have 5-10 bowel movements a day. Before surgery I would go once a month or so and I had toxemia on many occasions.

I have a rare accident depending on how much fluids I intake, and those I laugh off because I know that things are working at least. I can't stress enough how important your fluid intake is after you go home. In other words NO WATER=NO POOP. lol When I am hydrated enough things pass through rather quickly.

I have some problems with gas and bloating occasionally, and weight gain was significant once I got health after surgery no matter what my diet, but I am managing. Actually, I am 3 months pregnant and that brings on its own problems, so life goes on.

You will do fine, the more you know, the better you can expect and anticipate your own needs. God Bless!

Amy E
New Member


Date Joined Apr 2016
Total Posts : 3
   Posted 4/13/2016 5:44 PM (GMT -6)   
I had a full colectomy Aug 31, 2015 . . . inert colon, lots of bloating and distension. I looked pregnant! Wouldn't go for weeks. Took lots of Miralax, which made me poop in the bed (lost a few boyfriends . . . ). But had my surgery and things changed. I was told to expect diarrhea for up to 6 months, that I would have to take Immodium, which was stupid: Miralax to poop, Immodium to not poop ---- what's the difference? My experience was different, however -- diarrhea for 3 days and then, bam! Normal bowel movements for the first time in twenty years!
Anyway, lost about 20 pounds after surgery. Due i am sure to not really being abe to eat anything for a couple of weeks. My experience post surgery was that initially was digesting food in 4-6 hours. I would eat and soon after would go. This has since slowed down. Today (April 2016) it is taking food anywhere from 12-24 hours to clear my system. I do take Metamucil, which I love. Have tried fiber pills, but if you don't drink enough water with them they block you up. Prunes are also a godsend. Told by Dr to eat high fiber diet, which I do. Today I took fiber pills and not enough water and I am feeling constipated which scares me --- don't want to go back where I was last summer before surgery! Took extra metamucil and am hoping it will help!!! Anybody else scared your body is going to revert to never taking a crap?

Amy E
New Member


Date Joined Apr 2016
Total Posts : 3
   Posted 4/13/2016 5:46 PM (GMT -6)   
p.s. no bag for me!
New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, September 19, 2017 2:52 PM (GMT -6)
There are a total of 2,870,467 posts in 315,004 threads.
View Active Threads


Who's Online
This forum has 156505 registered members. Please welcome our newest member, Gottogogirl.
513 Guest(s), 8 Registered Member(s) are currently online.  Details
Froggy88, Kent M., Michael_T, Serenity Now, Gottogogirl, Starlight*, Jerry_Delaware, March1957


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2017 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer