Options for Colon Removal: Bag or Reconnection?

Hi, I had my sigmoid colon taken out by mistake. It was fine. It was found out later that I had a motility problem of the colon. My large intestine does not work. With the sigmoid out, I have a rectum. I am wondering if I can have the small intestine hooked up to the rectum or shall I just stick with the bag I have now. I keep getting a feeling like I have to go. I thought this would get better if I had the colon removed. I think it also gives me pain since I have pain every day to the left of the belly button. The doctor says he could do it, but there might be a blood flow issue since I have already had an operation in that area. Also, I would have to go too often without a sigmoid colon. Question: I hate the bag, should I try the operation or just stick with the bag? I have a loop ileostomy now. I thought maybe after a rest, my colon might work again, but they are telling me no. Does anyone know? There is nothing wrong with it other than the peristalsis. The muscles don't move the poop. I get constipation. I tried all kinds of meds, but nothing worked. I even tried to drink a gallon of GoLytely every 4th day. This didn't work. After a while, I had no choice. I had to get the loop ileostomy. If you can answer some of my questions, that would be great.

Thanks, P

I too was diagnosed with severe bowel dysmotility (there was no peristalsis). I had my whole large bowel removed in 2004 and had a J-pouch connected. Things were fine for the first 2 years, then I started to have the same symptoms as before. I had tried every medication, diet, etc. out there with no success. Finally, at the end of August last year, the surgeon went in to have a look around and noticed that the J-pouch plus 3 feet of my small bowel had totally stopped working. So we decided to try the loop ileostomy but leave everything inside just in case it didn't work. So on Oct 4th, I had the surgery and all went well except the stoma was very flush with my skin and causing major problems. In November, I ended up getting an obstruction and he was going to operate again to see what was going on. It turned out that the muscle around the stoma was too tight, so he fixed that and decided to give me an end ileostomy but still left in the J-pouch, etc. Well, in December, I was rushed to the emergency room and had emergency surgery as the J-pouch was necrotic and very badly infected. So all of that was removed, but I still have a portion of my rectum (I wish he would have removed it). I am very happy with the ileostomy and things are working out well. I like the fact that I can see the motility and that way I can keep an eye on it in case it stops, as well because that is the fear now. If I were you, I would think really hard about getting anything done because the motility disorder could affect the small bowel as in my case. I don't want to discourage you either, but I wish that I had known someone with the same problems before I had all of that surgery done. Please keep me posted on how you are doing. (((HUGS))) Rebecca

Rebekeh,

You certainly went through the mill. Your advice is certainly most invaluable for all of us.

X_

Balsi,
Tell you what, I really don't know anything about your condition. Never even heard of those words. But I think, mind you, think, that if I were in your shoes, I would give some serious thought to having the colon removed and then go for a reversal. I have had both and I would not trade my reversal for anything. Like I said, I am not familiar with the procedure nor the diagnosis you describe, but I would surely be asking some questions of my medical providers.

"I had my sigmoid colon taken out by mistake. It was fine." Wow! This comment reminds me of the Black Knight in Monty Python's Holy Grail. Maybe you can do without the remaining colon or perhaps you might try getting along on just one leg. Sorry, I don't mean to be disrespectful but something seems very wrong here; and I am left with a bunch of questions. Why was a healthy sigmoid colon removed in the first place? Are you still seeing the same doctor? Wasn't it very convenient for your doctor that they found a motility problem after the fact? I think you are doing well to 'ask around' on your issue; but, at the very least, I hope you are seeking competent medical advice from a different doctor. Good luck!

Balzli,

What you have, according to your description, is colonic inertia. Very little is known about it.
The peristaltic muscle contractions of the colon simply stop.
Fluids or diet do not help it. Massive amounts of Ex-lax may work for a short period of time. The only known cure is removal of all but about 18 inches of colon. That is not guaranteed. If faced with this condition, absolutely no fiber intake. It makes it worse.

If not treated surgically, megacolon will develop. Leading to toxic
megacolon, again leading to a rupture of the colon.

I have loads of information on this subject. If you care to learn more.

To answer your question, the J pouch works well with colonic inertia. That is because you are not fighting Crohn's or radiation from cancer. You should have an intact rectum.

Just remember not all surgeons are created equal. Get one that has done several J pouches and likes to take on the real hard cases. Ask questions. Lots of questions.

Good luck

Rick.....

Hi,

I had ulcerative colitis, so I am not familiar with the motility issues. But I do know that people who had their small intestine hooked up to their rectum had major issues. They would end up in the bathroom 10-20 times a day, virtually after eating anything. Those were the days before the J pouch procedure. I've lived with my ileostomy for more than 40+ years without any major issues. I never wanted to go through the pain of more surgery or have to be tied to a bathroom ever again. Do your best research before making a decision and do what you feel is best for you.

Hi.. I am new to this site and I think it is great for getting input from other people. I had a subtotal colectomy in Feb 2009 due to severe colonic inertia.. My small intestine was reconnected to my remaining 7" of colon.. I have had nothing but trouble since. I lost at least 50 lbs because I cannot eat anything without running to the bathroom.. At first, it was at least 20 times a day.. I developed a severe hernia and had a second operation to correct this.. Also two blockages.. It has been 2 years of hell.. I am about to have an ileostomy in a few days.. I am currently on injections of octreotide acetate 100 mg 3x a day to slow down some of the function.. I take at least 8 Imodium a day. I take 6 Wellcohll a day.. Lotrel 2 a day.. Occasionally perigoric.. Vicodin and Ultram for pain.. Librax for spasms.. All this for one small meal a day.. Anymore and I have incontinence in my sleep so I wear diapers to bed.. Thank God I do not have a husband or a boyfriend at this time.. My husband passed years ago.. I hardly ever go out.. Never sleep over a friend's house or family.. If I do go out, I do not eat at all.. Sometimes for 12-24 hrs or I cannot do anything.. I am malnourished and weak and I know I have to do something.. Reading much about the bag, I think I would rather empty that than be in diapers for the rest of my life and not eat.. It looks a lot easier than what I am doing now.. I sure hope so.. I know it will not be easy at first with trial and error but I hope it is better than this.. A J-pouch would not be an option for me as I have mesh holding up my small intestines and had blockages. So if anyone is considering reconnecting small intestine to remaining small amount of colon, do more research.. I wish I did.. I have no answers but this is my story.. Thanks for all your input.

The J-Pouch is worth investigating. After 8 years of debilitating ulcerative colitis and then a temporary bag, my J-Pouch is just about 2 years old. I now live a life I could only have dreamed of a few years ago. You need to approach it with patience and discipline but in my case - and in the majority of cases I know of - the pay-off is so worth it.

Hi. I had ulcerative colitis for 7 years before I finally had my large bowel and rectum removed. The surgeon created a J-pouch which worked from 1989 to about 2003 when I started having major problems. Turns out I had a stricture (narrowing) and a bowel blockage. This led to a loop ileostomy in 2004. Because the J-pouch was still inside, the surgeon did not want to remove it. He said because it had its own blood supply there was no need for removal. Well, after many problems including blood clots in both lungs, and after being on antibiotics for a year, they finally decided to remove the J-pouch in 2006. I have had an end ileostomy ever since. So in answer to your question of should you have the surgery, it depends. You might end up getting a permanent ileostomy in the end anyway. Best of luck to you in your decision.

Josie's mom

I also have a bag and an ileoscopy. I have been fighting colon cancer for approx. 20 years. I lost my ascending colon 20 years ago and managed to change my eating habits, got into the vitamin world, and was doing great until I got a hernia and was unable to do any more colon hydrotherapy treatments. I had become a colon hydrotherapist. If I were in your shoes, I would have the reversal and look into colon hydrotherapy - it worked great for me before and has turned around a lot of people I know, including children who are unable to be regular (constipated) and have spastic colons. Believe it or not, colon hydrotherapy keeps the colon clean and keeps everything flowing. So you don't need prescriptions to keep you regular.
My only mistake was to listen to the doctor and have total removal of my colon this last time, and I should have only had the tumors removed. After it was all over, I was told I only had cancer in the tumors, not in the colon. I wasn't even told what the bag was about. I thought it was a permanent bag that I would empty and it stayed inside me, so I didn't do my research.
(My fault - but when you are in so much pain and in the hospital on drugs, unfortunately I
didn't make the best decision and am trying to be positive about my situation.
You have a choice - I would look at every avenue before making a permanent decision.
Good luck, Butterfly48

Balzli757... If you had your small intestine hooked up to your rectum, you'd spend most of your day on toilet trips. The small intestine is NOT designed to hold food, it will just push the food along, absorbing goodies as the food passes through. The large intestine is the storage device and is responsible for absorbing water and salt.