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I had my colectomy in May of 2006. I was diagnosed with AFP, and was found to have thousands of polyps and was told that they would become cancerous without doubt. I agreed to the surgery, and have been sorry ever since. I have frequent bouts of bowel urgency and often incontinence. My small intestine was attached to the small portion that was left of my rectum, but it never has worked the way I was told it would. I wouldn't wish this on anyone.
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I am the 21 year old who posted in September about my fear of my upcoming surgery. I had my total colectomy on December 17. Though the goal was to do it laparascopically, the realized during my surgery that my colon had grown through my spleen. It took them 7 hours to meticulously cut it away. Though I had a world-renowned surgeon, I still developed major abscesses in my abdomen. Every day they would stick a needle in and try to drain it. I had 3 other drains that stayed in. On top of that, I developed double pneumonia and was running a fever of 104 for about 4 straight days. They ended up opening me back up to look for the cause of the raging infection. My white count soared to 40,000, and the doctor told my parents that they should probably call in the rest of my family. During that next surgery, they used 16 liters of an antibiotic laced solution to cover all my organs. But it didn't stop the growing infection. When my oxygen sat level dropped to the 70's on 6 liters of oxygen, I was placed in the ICU for most of the rest of my stay. My left lung had collapsed during surgery, and the pleural space filled with 500 ml's of fluid. I had a thoracentesis done to drain the fluid, but the pain only increased. I screamed and screamed...it was awful. After 35 days, I was released from the hospital. The doctor says I cannot return to work or school for 6 months. However, I am beginning to have normal BM's -- every day -- for the first time in my life. I'm beginning to see light at the end of the tunnel.
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I has surgery back in 2000. I was diagnosed with UC at an early age and when I was 20 I had sugery to try to get away from the steroids and flare ups. My colon was removed and I had an ileostomy bag for 6 weeks and then it was reversed. Since then I have had numerous obstructions does anyone have any advice??
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In 10 days I am going to have my entire colon AND rectum removed. They are going to give me a J pouch. However, I have been told that J pouches do not work well for people who have this surgery for chronic constipation. The reason is because our pelvic floors are very weak also. I will be wearing a colostomy bag for the first 3 months after surgery, then they I will go back into surgery and have it removed and the J pouch will take over. I would GREATLY APPRECIATE hearing from anyone who has had this surgery for chronic constipation. Or, can you tell me where I might find someone who has? Thank you so very much.
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Hello-
Well I had a total colectomy in dec of 2008 at the age of 21 and everything was going great. About six weeks later I had a bowel obstruction that resulted in surgery with the removal of adhesions. I have been so happy with the result because i have been miserable with constipation my entire life. Even though i had post op problems i would not change a thing. However 7 weeks after my bowel obstruction i found myself with the same pain and back in the hospital with another bowel obstruction. this time i was sent home on a clear liquid diet after a few days in the hospital and am currently waiting to see what happens. it is hard to say what caused it because everyone is different and i thought i was eating the right things. i did have a heavy week of drinking alcohol and was wondering if that had anything to do with it. i have never had a problem with alcohol and my stomach before the surgery but was wondering if anyone could give me some advice on how they react with alcohol. i am feeling guilty that i had something to do with the second obstruction?!
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I am having my surgical consultation in a couple of weeks, so researching and planning ahead...

A curious question: When they remove my colon, what will it be that replaces the displaced volume - fills upthe space my colon used to take up, that is?

~~ Frank in NC ~~
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I had a total colectomy for chronic constipation 6months ago. I'm 21, at age 18 I had an resection removing the sigmoid and part of the rectum, because I had presented with prolapse and sigmoid intussesseption. They hoped my constipation was due to this causing a blockage, but after my 1st operation, I was back on all the laxatives. The following year I had another pelvic floor repair. Then last year, when I was no better, my surgeon recommended I had a colectomy with ileo-rectal anastomosis. In general...i feel so much better! :-D Its amazing, can't quite belief it's been done and hopefully can move on with life normally now!! In reply to hhtm1987's post.... Im so sorry to hear you have had adhesions and more surgery, I really hope things get better for you! About the alcohol...I actually came across this sight because I wondered if there was any info about alcohol after colectomy...when I have a drink now I feel pretty rubbish straight away? I don't know if this is just me or did the colon breakdown alcohol in some way. It has never given my trouble with obstructions though, more the opposite. Like the liquid diet though, i definitely still feel better not eating anything heavy. I wondered if anyone else doesn't cope well with alcohol now?
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I am having the surgery in 6 days and am scared to death but NOTHING else has worked. I appreciate all your input and pray for the best recovery for all of us. Rosemary
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I had a total collectomy Feb 18, 2009. So almost 5 months ago. I went through some adhesions in my first couple weeks of recovery but overall I have been so happy with the results. I can eat most everything and I have been losing some of the weight gained due to prior food issues and inability to feel consistently well enough to keep active. Depending on your challenges I think it can be the best choice made in life with the greatest rewards. :-)

Over the past few weeks I have encountered challenges with bladder infections and I was curious if anyone else had these issues? I have now been on through my second round of treatment with two different types of antibiotics. I still feel the symptoms. I am beginning to wonder if this could be something more like and adhesion to my bladder from my small intestines? Has anyone run into something like this?

Thanks

Toni
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I had a laproscopic hemi-colectomy 22 days ago... I lost 17 pounds prior to the surgery so I could survive it, since I have COPD.... I went in at 120 lbs. and came home at 115 lb.. It took me 5 days at home before I could eat small meals, the thought of food wa repulsive at first. Then I hovered around 115 for about a week and experimented with different 'soft foods' on my diet.

With intermittant diarrhea and frequenty urination I lost another 8 lbs., probably due to the Keflex they had me on for a week for one infected suture, and a slight bladder infection from my catheter. Now I am slowly gaining ground drinking 'Ensure', eating breads and proteins, and becoming more regular. I had no idea recovery would take very long, but bowel adjustment can be extensive if you eat the wrong things. Experiment, and get specific diet recommendations from your surgeon... If you hold your head up sometime you may see a long road ahead, so I just focus on the ground in front of me, and take it all with patience (as best I can) and informed determination. Think positive, I think it helps...
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Hi, I went for my consulation today to discuss a total colectomy. I have had UC for 13 years and can't take it any more! I was shocked to hear that the scar will be from the top to bottom of my tummy. How have people found the scarring? Is it as bad as it sounds? I am only 30 and have two young children. I'd really like to hear some positive stories if there are any? It needs to be worth it! The operation is my choice and I don't want to end up in a worse situation than I am now (if that's possible).... :-(
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It depends on how sick you are now. Your quality of life is not going to be the same, especially right after the surgery. They say it could take up to a year after the surgery to reach your new "normal," which will still not be like it was before you got sick, but it will be better than when you were sick. I found they were wrong about the one-year thing though. By one-year after the surgery, it was still pretty difficult for me physically and emotionally. But things continued to improve slowly and still do, five years later.
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I had my colon removed in May. Unlike most of you the opposite happened to me, I gained weight, around 20 pounds (and still rising). I am 19 and only 5'2" so 20 pounds added to my already prednisone inflated body is not an emotional booster. The truth is, as superficial as it may sound, I have more confidence issues with the weight gain than I ever did with the inability to control my bowels. With that said, I was suprised at how easy it was to adapt to a ostomy bag. They really aren't as bad as they seem. I will have to have mine for another year. And although going to the bathroom 6 times a day for the rest of my life may seem hard to deal with, it is far better than the 15-20 times I delt with before the surgery.
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I had my total colectomy with rectum removal in 2004 and had my illeostomy takedown in 2005. I would highly recommend the surgery if you have very painful frequent bowel movements. Yes you do have several bowel movements a day after the surgery (I have more than 6 and even have to get up once during the night) but it is so worth it! No more large incontinant stools, pain, bloating, nausea, inability to eat anything but mashed potatoes and broth-I have occassional rectal leaking but VERY LITTLE...If I eat a large or greasy meal late in the evening I may have an urgent stool around 2 am or have to get up 2 times during the night. I have gained about 25 lbs since my surgery but I think it may be due to my sedentary job and stress. Due to the extent of my ulcerative colitis I had to have my rectum removed and my j-pouch is attached straight to my rectal muscle which makes me leak a little more. Had I been able to keep my rectum I would have had less leaking but having a great risk for u.c. in the recum later. I am so happy to have had the surgery! It did take time emotionally to adjust (especially with an illeostomy for 5 months) but the hardest part is letting go of the fear of always having to have a bathroom near. I can eat almost anything (prefer to stay away from greasy foods), do almost anything (carry a small emergency kit of pad and cleaning wipe in my pocket/purse), and NO PAIN.
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I almost died in november of 2007. I was constipated and didn't know it. My colon ripped and I became septic.
8 days later, I woke up in ICU without my colon and an Illiostomy. Since then, I have fully recovered and had all "my pipes" reconnected. My problem is that I have gained 30 lbs since then and don't know how to go about dieting. I seem to be wanting to eat all the time. Slimfast runs right thru me. :$ Any suggestions would be greatly appreciated. :-D
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