Sub-Total Colectomy

Diseases & Conditions Ostomies
1
I am also new to this forum.  At this moment I feel so embarassed, afraid, unsure of, and do not know what kind of research, questions, etc. to ask of a surgeon.  Even though all prior medical documents the need for sub-total colectomy, and I know this is correct, I am unsure.  Does your quality of life improve, do you have more energy, do you look sick all the time, etc., etc., etc.  Please, any information you could direct me to would be most appreciated.  My doctors have recommended me to go to Cleveland for this procedure due to prior surgeries on the abdomen, indicating that Cleveland is "top-notch".  Any feedback on this suggestions.  I think I am just beginning to wade into getting prepared, or wonder if I should feel this way.
2

Are you having the surgery for UC?

Yes, the Cleveland Clinic is outstanding for colorectal surgery.  If you live in Ohio that would be the ideal choice.

I had the surgery for chronic refractory UC 5 years ago.  My life is 100% better today and I have not lost a day of work due to illness since then.  In fact I am so healthy I have put on 20lbs more than I should be carrying! 

Life is great!

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
 

3

KayKay,  I had a subtotal colectomy in October of 2005 and had the reversal in February 2006.  On April 21 2006 I had the take down so I am 8 or 9 weeks post surgery.  At least my experience I fell a whole lot better.  I won't say 100%, but definately better than when I had the U/C.  I've had a few rough weeks after the surgery but about week 4 it started to come together.  I am at the stage now where I am trial and error on food, and for the most part, lettuce and tomatoes are a no no for me.  Other than that, I'm relatively flexible.  I take immodium as I need it, and my Doc today started me on some probiotics to help out.  He won't see me now for another three months after todays appointment and has released me back to full duty at work.  I went back to work 4 weeks after the take down and didn't have any problems, as long as there was a bathroom available. 

I won't lie and say it was a cake walk because it wasn't, but I get better each day and look forward to each week because I am getting better and stronger.  Hang in there.  Phil

4
No, the surgery is not for UC.  Inertia instead.  My colon just doesn't work.  I am on the new medication Amitiza, and have been on it a full week with no results.  I am in the beginning stages of this process toward the colectomy.  What type questions should I be asking.  Thus far, all I can indicate is my colon does not work period, and it has come to the point that it is getting me down.  Ongoing the last 11 years, especially since numerous stomach surgeries for hernias.  Thank you for responding, and if you could help me out with questions, it would be appreciated, like what if the rectum is atrophied, would they go ahead with no colostomy?
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No, if your rectum is atrophied you will get a j-pouch which is what Midwest Phil and I have.  A j-pouch is considered a false rectum and functions as a resevoir for waste.  The typical surgery for colonic inertia is just to remove the offending colon and attach the small intestine to the rectum.  I think your life will improve dramactically with the surgery!

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
 

6

Hello KayKay!

I, too, suffered over 11 years with chronic constipation known as a slow transit colon until finally someone actually ran several tests and said either you can continue to live with the lifestyle you have been horribly living day in and day out, or the doctor said I can make you 95 percent better in the beginning although you might be having 7 to 8 bowel movements a day without a prescription, over the counter laxative or worst of all, a daily enema.  All of the above stopped working over a year ago.  I opted for the surgery.  Although I had a complicated surgery lasting 9 1/2 hrs, and the second day another 5 1/2 hours for ER surgery for blood clots, then three months with a temporary ileostomy making me depressed believing that I would not have my ileostomy reversed, which I eventually did.  It was all worth it.  Once your small intestine assumes the responsibilities of the large intestine, plus process of elimination of what you could eat and cannot eat for the time being, and don't forget the burning bumm from diarrhea, it will all work out in the end much better than all those years of constipation which nothing seemed to help you have a pain free bowel movement.  I am still recovering and I am trying not to let it control me.  I am trying to control it so that I could eventually return back to work without having to run to the bathroom every time I eat something.  Just make certain to keep yourself hydrated with plenty of fluids.  I cannot drink sodas or certain juices, but I do drink alot of Propel Water with Calcium. 

 I hope all goes well for you and keep a positive attitude going in for your surgery.  It will all work out for you.  You have to believe in yourself and trust the doctor performing the surgery.  Then everything else will fall into place.  Read all the forums.  You are not alone!

Good Luck and Keep Us Posted!

Angel

 

7
Thank you Angel.  You sound like a determined lady.  And you sound like I did 11 years ago while having a simple heart cath, and the doctor almost severed my femoral artery which led to multiple surgeries to save me, and then having multiple adhesions, etc.  I still have to see my regular surgeon, and then get referrals, paperwork for insurance determination, etc., etc., etc.  I just feel like my quality of life will be better.  I live 8 hours from Cleveland, and I would much prefer Nashville, Louisville or St. Louis.  Understanding someone with severe constipation takes someone with severe constipation.  Again, thank you, and keep going forward with your recovery.  There is lots of roses to smell.
8

KayKay,

I also suffered from cronic constipation for 8 years before they started doing tests and found out that my colon on the left side was non-funcionable. They said I needed to have the partial colectomy. I did in August of 2004 and things were great for almost a year. I was going every day with no pain and then all of a sudden the pain, and bloating came back. I then went in for a coloscopy where my doctor determined that the rest of my colon was no good and I had to have a total colectomy. I had my total colectomy on July 7th of last year and have never felt better. The fact that they had to go in and do the total was very disapointing after all I had already been through and it is very rare aparently but I figured that I would let you know that even after all of that I would do it again in a second if I had to. I feel great most of the time and you adjust to eating certain foods that don't go through you so fast. I go atleast 4-5 times a day and I would much prefer that to the pain and suffering I was dealing with prior. If you have any questions feel free to ask since I have gone through this experiance and it was not all fun but definutly worth every minute.

 

Melissa tongue

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I am going to see my surgeon tomorrow, and for some reason, I am anxious.  I do not know what to expect or even what to ask.  Thank you all for your replies and support.
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Kaykay,
I am also new to the forum, and am reading as much as I can about what is involved with total colectomy. I also have severe colonic inertia and have no life. Very ill and fatigued, and so uncomfortable with bloating, gas, etc...  It's taken control of my life.  I never thought I'd ever consider having my colon removed, but when you get desperate, as you know, it starts to look like an appealing option - though at the same time really scary. This forum has been a lifesaver to me. I don't feel as scared about possibly having the surgery, b/c so many of the people on this forum say they've gotten their lives back from the surgery. 
 
Anyway, please keep us posted on what you decide to do. We're all here to support you!
Kim
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Hi.  I am scheduled to have a subtotal colectomy the first week of August and have so many questions and so much anxiety about the procedure.  I have been reading the messages/ information about subtotal colectomy on the HealingWell.com website and am so thrilled to have found it (and you :-)  Unlike many of the people who have had the surgery, I do not have Crohn's or UC or really anything other than chronic (life-long) constipation and bloating w/associated pain.  I, like almost everyone else I've read about, have tried everything, including the new "miracle" drug Amitiza which worked great for about a month and now doesn't seem to have any impact at all, which is pretty much the story w/everything else I've tried.  I think that, after having talked to the surgeon yesterday, my greatest fear at this point is having chronic diarrhea because I'm not sure that will be any better than the chronic constipation I now deal with.  Kaykay - did you have the surgery.  If so, you would be 2 years post-op and I'd like to know how you are doing.  I'm grateful for all of you people who so willingly help those of us coming behind you, and I can hardly wait to "talk" to you.  Thank you.
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Hi...rjwslpdr...I am scheduled for August 11 for my subtotal. Just to add to my constipation problems that have been lifelong....for the last 5 1/2 years, I've had severe nausea, pain, headache, and a mysterious lump that would appear after eating anything. I had been to local doctors, Univ of Chicago and Mayo for intense testing. Basically, the only diagnosis was you have a tummy ache (functional dyspepsia) and need physical therapy for pelvic floor disorder. Mayo is alittle overrated. Finally, a nurse friend of mine suggested her gastro doctor. He ran two simple tests that no one ever ran....HIDA scan for the gall bladder and sitz marker test for the other end. Lo and behold, my gall bladder was not working. Also, the sitz marker test came back with all 72 markers on the 7th day and 63 on the 10th day. I got my gall bladder out, a hernia fixed, DNC and endometriosis removed at one time May 2. I went to Rush Univ to talk about the colon problem. My doctor said without a doubt the colon removal is a great idea for me. I too have tried everything: water, fiber, Amitiza, MiraLax and laxatives, enemas....herbal remedies....nothing works or stops after a week or so.

I am looking forward to the surgery but nervous...so I'd love to hear more recovery stories... My family and I have planned a vacation to Mexico for the end of October. Does anyone think that is a bad idea? It'll be about 2 and 1/2 months after surgery.

Thanks to everyone who has shared.
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Ok I am new to this and I posted a forum called colostomy for constipation/slow colon motility please go and read it I have lots of questions.. If u read the blog I too suffer from severe constipation and my doctor practically laughed when I said I wanted a colostomy... no knowing until I read this that they actually do do that for constipation and not only uc or crohns... anyways I guess I have a lot more research, what's the difference between having a bag and not and since I already have severe rectal pain will I still have it if I don't have a bag and also how in the world do I convince my doctors that this is something to atleast consider? Please read my other posting so that you can get the full picture... thank you for any help and advise I can get....
14
Ok I am new to this and I posted a forum called colostomy for constipation/slow colon motility please go and read it I have lots of questions.. If u read the blog I too suffer from severe constipation and my doctor practically laughed when I said I wanted a colostomy... no knowing until I read this that they actually do do that for constipation and not only uc or crohns... anyways I guess I have a lot more research, what's the difference between having a bag and not and since I already have severe rectal pain will I still have it if I don't have a bag and also how in the world do I convince my doctors that this is something to atleast consider? Please read my other posting so that you can get the full picture... thank you for any help and advise I can get....
15

If you have a bag, you either have a colostomy bag or an ileostomy bag.  You have a colostomy bag if you keep your colon.  If you don't have your colon, you need an ileostomy bag.  I had a colectomy last year and I don't have a bag.  With a colectomy, the colon is removed, and the small intestine is attached to the rectum.  A colectomy allows you to have a bowel movement on your own, almost like normal.  If you can, I would recommend asking your physician about a colectomy, first.  I had colonic inertia, a motility disorder, and was constantly constipated.

Butterfly

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That all makes a lot of sense and offers me better understanding... I will mention that to my doctor on my next check up... I also replied to your other post... thanks...
17

Butterfly

I have the same diagnosis as you...slow transit, slow motility and chronic constipation...I am having total colectomy Aug 11...can you tell my how your surgery went?  how long did it take to feel normal?  how was your recovery? 

thanks

sugarbug

18
Hi all....welcome. I also had a total colectomy for slow transit, colonic inertia, etc. It has many names. I had my surgery Jan 28 and was in the hospital for 9-10 days. I had some complications and was readmitted a month later for another 8 days. I had four abscesses from a leak at my connection (anastomosis). I had two drains placed and had those removed after about 45 days. I was out of work for a little over three months. It was rough, but i would do it over again. I had chronic constipation for eight years with no help from any remedy. I was going about 8-10 days and now I am going much less and actually need the helo of a laxative 1-2 times a day This makes me go about 8 times a day. I feel much better and I feel as though I have my life back since the surgery. I lost the 22 lbs I was holding onto and now am a healthy 118lbs. I can eat pretty much whatever......I am starting the biofeedback therapy in Jult to see if it helps strengthen my weakened muscles form all the years of straining. I am very pleased with my surgeon and the surgery itself. I highly reccommend it. I had many complications, but as I said I would do it again tomorrow.
 
Lizzie
19

Has anyone out there had a trouble-free colectomy?  Just surgery, no complications, no more constipation/gas/bloating/pain?  If so, please tell me how your recovery went.  I will have only 4 weeks before I have to go back to work.  At this point, I'm most concerned about the pain and the frequency and consistency of bowel movements.  I'll ask my doctor this question, but does anyone know if they cut through any of the abdominal muscles?  My surgery will be done laparoscopically.  The surgeon described it as four 1" in. cuts (two on each side) and a cut from my naval to the pelvic area.  Has anyone had that experience?  Thanks so much for talking to me about this. 

20

Mine was done laparascopically.....I have four inscisions. I have two to the side of my belly and one in my navel and a six inch inscision below my bikini line. I think every surgery has its own little complications. I have been back to work since middle of april and although the firsst couple weeks were hard with fatigue I have done great. I worked long 13 hr days and still was able to do it after a three month leave. I had to take a hike to the bathroom, but it all works out. I have not had any accidents and it has given me my life back. I had complications and still deal with some issues, but it was a life saver for me.

lizzie