1st Few Weeks after Colectomy and Beyond

[dostalj]

Hello all,

I have just been given the surprising news that I have a condition that can only be corrected by a colectomy.  I have a 15 year history of chronic constipation that has been getting much worse in recent years.  After much evaluation, it seems that I have a very long, redundant, colon that loops back over itself in several places.  After losing about 140 pounds 5 years ago, my colon has even LESS room to do its loop-dee-loop and now has a habit of bending/kinking and slowing things down even more (causing insane pain and horrible bloating).  So things are dramatically worse.

My colon also lies flat on my pelvic floor, creating a severe angle at the path of evacuation.  That will have to be fixed, as well.  

I have searched and searched and can't find any "real" info on the recovery period and the quality of life after a colectomy.  Most of the info I find is on the immediate postoperative period of a laparoscopic procedure.  Will my BM's be normal? (they haven't been in so long, I wouldn't really know what "normal" is!)  How long will it take to normalize?  weeks?  months?  Do people tend to have a significant list of food intolerances after a colectomy?  I expect to lose my pain and bloating... will there be any other changes in my quality of life?  

I meet with the surgeon on Wednesday and will learn more.  He's a great guy and has done surgery on me before. But, for now, I'd like to hear from "real" people who have been through this.  

thank you,
Jules

[ng1031]

Just wanted to update everyone incase they experience the same thing. The reason I was experiencing so much cramping was actually NOT normal and was a sign of a very serious blockage.

On February 26, 2013 I was rushed to my local ER because of course I could not go back to Mayo in MN. After weeks of cramping my bowel movements started to slow down drastically. Each time I was concerned I would contact my surgeon at Mayo who would refer me to his nurse who would call me and tell me this was normal. Before I knew it I had not gone in 3 days and was feeling worse so I contacted my motility specialist at Mayo who instructed me to go to my local ER. I am glad that I did. The ileus blockage at the anastomosis came back with a vengenous. The doctors told me that the first blockage I got may have been due to the flopped over section of the small intestine blocking my rectum however the twist did not "form". The twist was the way my small bowl was when the surgeons connected it to my rectum. When they cleared the blockage the twist was still there and opened up but it formed a crease where it was flopped over. So now my body was trying to heal the crease and in the process was closing up that area of the connection. It was to the point they could not open me up with a decompression tube like last time because it was pretty much healed shut with only 2 cm if that to spare. Another surgery was the only way to fix it. The surgeon at my local hospital went in to do laproscopic but ended up having to do "open" surgery to be able to see and fix things correctly. He removed the healed up/closed shut anastomosis connection. He then created a new one that flows with my body and has a larger diameter. The small bowel no longer twists as it connects to the rectum. It not flows with the curvature correctly to allow bowel to flow the way it is suppose to.

[dostalj]

Oh my.... I apologize.  I let this thread slip back in 2009 after the "emergency" had passed.   I ended up going to my surgeon who said, "what?  is the GI doc kidding? We don't typically do total colectomies on otherwise healthy individuals due to slow transit issues."  So, the two of us worked out a solution, a routine, that has helped me live with my colonic inertia and redundant colon.  He essentially did the job of the GI doc who punted with me.  The truth is, my colon simply doesn't work by itself.  But, that doesn't mean it had to come out.... at least not yet.

He put me on Amitiza, and I HATED that.  The results were more frequent bowel movements, but they were unpredictable and often put me in bad situations.  So, now we've just settled on a high dose of OTC laxatives twice a week.  They are fairly predictable, so I can pretty much time when I will need to be home to have some privacy.  I also take double the amount of recommended OTC fiber supplements.

It is not the perfect solution.  But, for now, I still have my colon.  It is inconvenient to have to time my doses of laxatives to fit my VERY active lifestyle.   But, in order to avoid the potential complications of yet another abdominal surgery, I'll dieal with inconvenient.  

Thanks
Jules

[ng1031]

I had a laparoscopic colectomy with ileorectal anastomosis surgery at the Mayo Clinic on January 18th for slow transit constipation. I was suppose to be in the hospital for 1 week and ended up there for 3 weeks. I formed an ileus.. the most pain I have ever felt in my entire life. I was on decompression tubes.. one in my nose/throat to my stomach and the other inserted in my rectum through the small intestine until my body could do things on it's own. Before the tubes I was vomiting bile. I was on morphine drip and it still was not enough for the pain. It has been aweful. Now I am home and no more narcotics.. just tylenol which to me does nothing but I understand that the narcotics are not good on the stomach. Did anyone else form an ileus? The surgeon told me that it happens to 10% of people and that the type I had was very rare. He also scared me when he said there was no guarantee it would not come back later on.

I also formed a blood clot in my liver so now I am giving myself Lovenox shots in the stomac every morning. I go to a doctor on March 9th to start coumadin pills. Because of this I had to stop my birth control. They believe it could have contributed to why I got the blood clot during surgery.

I am going more frequently (which is great from never going at all or feeling like your being ripped apart when you go) but because I am still on the liquid diet the bm's are also liquid. From hearing other people's stories I am surprised I do not got a million times a day. How much I go is pretty tolerable. I am behind as far as food.. I should be on week 4 introducing foods etc but instead I am only a week into things. The doctor sortof started me over after the ileus cleared so I am still on liquid/soft food.

Now its a matter of trying to deal with the aches and pains and these cramps whenever my bowls decide to move. Did anyone else experience these cramps? They are aweful. The doctors say its the small intestine trying to figure out what to do and that if it's making noises and moving that is a good sign that they are still working. It might be a good sign but its painful and keeps me up at night. I also getting a shooting pain whenever I pass anything that is not liquidy.. like if my bowl has any bit of substance to it I get this shooting pain in my lower right abdomen. Anyone experience this? Doctors say its because my body is healing. It just makes me nervous as I really am scared of the ileus returning. They told me as long as I am not vomiting again, passing gas/bm and do not have a fever that I am ok.

Just curious if anyone else experienced anything similiar?

[Lynn5585]

Your experience sounds very. Similar to mine. I'm so sorry.  I literally feel your pain. Im about 8 weeks post-op and not even close to "normal." But we are at least moving toward healing rather than away from it, like before the surgery.:)

[Maxipuss]

Hello,

It is so good to hear that someone else is suffering the same as me......I dont mean that in an incensitive way I have just been ill for so long and no one seems to have any idea or answers.  I am about to undergo a Subtotal Colectomy in a week or two and would also like some 'real people' advice about after the surgery and recovery and long term living.

How are you Jules?

Thanks

Babs

[lazybeagle]

dostalj---

what doctor said your redundant colon was a problem?  I have been to Mayo Clinic, Univ Chicago and other places and all doctors Ive seen say that colons get big and floppy and that has nothing to do with symptoms.  I also have abnormal pelvic floor angle.  I had a partial colectomy to remove some and despite telling docs "I feel better" they just say "that was wrong to do."  I still have a lot of floppy colon and want it removed but looking for a doc that agrees its a problem.







,

[Morecambe]

Hi - about five years ago I underwent a total colectomy for torrential diverticular bleeding and, in response to another Medhelp patient, posted my experience on Medhelp.  Try logging on to:-

http://www.medhelp.org/posts/show/523166

Do come back with any further questions that you may have after reading this posting.  You may also like to print off the page and show it to your surgeon and ask "is this what you would expect for me??"  

regards
Morecambe

[mammo]

My son had a total colectomy 26 years ago, and is now 38.  It doesn't sound like you are having a total colectomy, just partial?  My son had his entire colon removed, recovered quickly, but did have bouts with many trips to the bathroom at first.  I can't see this happening to you because they aren't removing your entire colon....correct?
My son is a marathoner, ultra-thoner, mountain biker, speed hiker, and will be competing in the Pro Am games this year in Jujitsu. So, as you can see, life goes on any way you want it to.  It sounds like nothing but good, can come from your surgery as you have suffered a lot.  Let us know how you do!  Best wishes...........