Need Info/Advice on SUBTOTAL COLECTOMY! Just found out I'm having this done...

Hi All- I am a 25-year-old female who has dealt with severe constipation my entire life, and yesterday I was told that I will need to have a subtotal colectomy. I am a bit nervous about this, not so much about the risks (because its sounds like its not TOO common and my surgeon is outstanding), but because they won't know if they will do laparoscopic or open surgery until the surgery day when they find out where my colon actually is. Also, they want to give me an epidural and implant some kind of anesthesia under my collar bones, which will leave small scars. The most devastating thing to me, (as a woman, maybe some of you ladies can relate) is... the scar(s) that will be left on my tummy, because I plan to get pregnant within the next year to two years. I don't want to have an ugly scar on my belly. Lastly, I will be student teaching this semester and need to find time to do it if I plan to be out for 2-3 weeks. Unfortunately, I must either postpone student teaching a semester (which puts of my career) and do the surgery soon which means I will finally have a normal life, or continue with student teaching and be in pain/discomfort for another semester. Not sure what to do.

I know this surgery is worth it, but I am nervous. I am looking for information and advice from people who have had this done... they are removing 3/4 of my colon and attaching it to my rectum. Do you know if the scar(s) will fade much? Is the surgery extremely painful? What should I expect? Has anyone had an epidural with this procedure? Does it hurt? Anything will help! Thanks so much!

SCHereIcome, I had a TC surgery back in Oct 07. I do not have a bag. The surgeon reattached the portion of my colon to my rectum. The surgery was done lapo so I have 5 tiny incisions around my abdomen and around a 3 inch scar right at my bikini line. I wear very low-rise pants and it doesn't show.

Below is some info I posted previously to answer someone else's question about TC surgery. I hope it helps.

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.

Hey....I just posted a respone to your question on the IBS board...

Chewing gum is a good idea...does it give you more gas though?

Hmmm. Noted!... ME!, thanks for the heads up on the CO2, accidents, and abnormal periods. I'll be sure to address those things with my doctor. And Amey, what exactly do you mean by plastic close?

SubColectomyHereICome,

Chewing gum after surgery there is no real evidence it works, but my surgeon said if anyone wants to chew after surgery they can do so. It won't do any harm.

My stay in the hospital was 4 days. I had my TC done lap and my scars are very minimal. I had four incisions - one on my upper belly about 1/2" in length, two on my lower ab about 1/4 to 1/2" in length and one around my belly button about 2" in length. The ones on my lower abs are all but gone. The one on my upper belly can still be seen but is fading and the one on my belly button is half gone. The part above the button has faded and the 1" below can still be seen but is fading. I also had one very small incision on my lower abs for my drain. This tiny incision has also faded away. I had my TC on 3/12/07. I do not regret having the TC. I feel so much better. I am no longer bloated all the time. I lost somewhere around 50-55 lbs - 30lbs of that was within 2 weeks after surgery. I am no longer addicted to sugar.

If you read Total Colectomy Parts 1-18 you will find a lot of tremendeous information. Everyone is helpful and you can read their stories.

Good luck with your surgery

SubcolectomyHereICome,

Forgot to mention that once you start eating your flatulence will smell much stronger.

I have a question for anyone who has had a total/subtotal colectomy. I constantly feel achey, nauseous, extremely bloated, etc., I assume because of my severe constipation (everything else is normal). I'm curious if this will change after I have my subtotal colectomy. Not only do I want to end the constipation, but feel better!

I would like to hear from someone who felt like this before their surgery... Has the achiness, nausea, and bloatedness gotten better?

Actually, bloating is the #1 complaint of those who have had the surgery. In a survey conducted 10 years post surgery, 80% of those who had a TC said they would elect to have the surgery again. I had a TC in 2001 which left me constipated and bloated. In 2006, my TC was revised to help things move through. However, it was not helpful. Finally in 2007, an ileostomy was performed. My situation is unique. Many people at this website have had great success with their surgery. I encourage you to look through the Total Colectomy heading of this forum and read as much as you can in those previous threads. There are lots of wonderful lessons to be learned and I am sure you will find many of the answers you seek.

Kind Regards,
Amey

Hi Sub, I know that your post is a few weeks old but I just wanted to say hello. I am new on the forum. I just found out that I am getting a subcolectomy on March 14th. I am 22, I will be 23 march 3rd. I have had abnominal pain with constipation for about ten years. I have been lucky enough to have finally found a doctor who ran tests to find out if I had something other than IBS. They are so quick to diagnose you with that. I have been given tons of pills over the years, I've been called crazy and I once had a doctor walk me over to the head doctor. I am also going to grad school to be a middle school teacher so I understand the student teaching stuff. Luckly I havent started yet, that will be in August. I am very happy, excited, nervous and scared. So many emotions. I am very glad to have found people close to my age with this problem. I just wanted to know when you were going under and if you have already, how you are doing. And if anyone else has any advice for me that would be great.

Hi Sam...my surgery is March 18th...wishing you luck!!!

My doctor didn't say anything about the things under your collar bones, nor anything about an epideral. i know it will be a laproscopic surgery. My doctor is teaming up with my gynocologist during the surgery if you can believe it. My gyno thinks I have endometriosis so he wanted to do a laproscopy and a hestiscopy ( in the uteris) to check for endometriosis. I think my female problems and pain is because of my stomach problems but he wants to check anyway. So I mentioned this to my colon doctor and he said that we can go ahead and do everything at once so I don't have to be re cut and put back under. I went for an ultra sound today for my gyno and they couldn't see my left ovary because the colon was in the way. He said it can be my colon pushing it down or it could be endometriosis. When I find out I will let you know. I did have a question of my own, after the surgery is a NG tube inserted or is this not normally done? I was a bit worried. And yes I am scared out of my mind, but excited.

Mom2sophia- wow yours is just a few days from mine... good luck.. what did your doctor say about what to expect?

That would be nice if it is only 4 or 5 days. That's not too bad, right? And wow, my doctor didn't say anything about an NG tube. Even though we will be under, that still scares me!

Mom2sophia & SubColectomyHereICome  ......

Good Luck to both of you on your upcoming surgeries!!  You both will do fine.  Be sure to keep us updated.   And, Yes, you both really do want the NG tube!  As yucky as it is, it is definitely to your benefit cuz ya don't want to be nauseated on top of having a sore belly.

Good luck.