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I had my total colectomy 10 years ago. Ever since then, I have averaged 15 bowel movements per day. It is the worst thing I have ever experienced. Literalky fifteen times a day I have to use the bathroom or more. And many, many times I have the most painful bowel movements in my butt hole. They crack, burn, rip apart, tear, feel like 5000 degrees hot pokers coming out and it is totally unpredictable. One day i will be fine and eat a turkey sandwich, next day I'll eat identical thing and be in tears with my butt ripping apart. I cant use Immodium because it sharpens the feces so much that when I have a bowel movement it cones out like razors. Plus, it doesnt really slow down the number of bowel movements I have per day anyway. I have tried everything to fix it even flown to Cleveland Clinic for treatments and I even have a nerve stimulator implant inside me with the leads attached to my anus but it does not work. I have used a lot of pain medicine since 2002 because the pain is so unvelievably bad. I am 29. I hate this so much. All I do is go to the bathroom and worry about when ill have to go next, if there will
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I had my total colectomy with it reconnected to the rectum some 18 years ago now. It was done for severe chronic constipation. I had a very long extended large colon with lots of loops and twists.

It was tough going thru the surgery then, but i believe now that it can be done by keyhole surgery.

I had not complications other than being silly and eating the wrong food when I got home from hospital and got a bowel obstruction and was back in hospital for a few days to sort that out.

Because the surgery was done for constipation, and others I have talked who have had surgery for the same condition, I do NOT go to the toilet frequently. I go as many times as I eat thru the day. So if I eat 3 times I go three times. However if you have surgery for any other reason than constipation, you will go lots and lots until it settles.



I did lose weight, about 12 kg in hospital, but it did take 10 days for things to start working again for me. I gained the weight back again gradually over 3 months.



Please be aware, you must eat a soft food diet for the first 3 months- this does not mean junk food. It means low fibre foods, fruit with no skins, no nuts, no heavy fat saturated foods like hot chips etc. almost like eating baby food again for at least 3 months until your intestine has had time to recover and settle. Gradually introduce one food at a time and see how you go. It took me over two years before I could eat fruit with skin on it...others never can. Its very individual, but its very important you eat well and be gentle with yourself - soft foods, no junk food, and small portions at a time help too.



18 years on I don't regret my surgery. It was tough in some ways, but it was so worth it. I live a normal life, I eat normally now and it was the best thing I ever did. One other thing, do allow at least 3 months recovery time, get lots of help organized to see you thru. Its worth it.
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I had the same surgery at the same time. I have had one bowel obstruction about two months ago. I have found that there are some foods I can eat but then others I know that do not sit well with me. Do you take vitamins, probiotics, etc?
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Hii Iriches, i had a total clolectomy 5 weeks ago. While i was in the hospital i was going to the bathroom 13 times a day. Since they tried 3 meds in hospital to slow down output, none of them worked. After 17 days i got home and have found a away to slow them down wiith certain foods. When i am going to washroom a lot, i eat smooth peanut butter, and a couple of single servings of jello puddings, they work amazing ly well, good for when you have to travel as well. The only drug i find that helps is if you buy tylenol with codeine and that helps, but you really dont want to get hooked on the codeine. But to have any kind of normal life i'll try anything. So i have managed to get from 13 times a day to 6-7 which is a big difference. Hope this helps you. Koootnay girl.
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oh wow, i sure feel for you. I to had a total colectomy 4 weeks ago. Was in the hospital 17 days, going t o the bathroom 13 times a day, and it was horrendous, the surgeons tried 3 meds to slow down the output, none of them worked and i was devastated. But since getting out of the hospital i have managed to get it down to about 6-8 times a day. Just by experimenting, i have found the best things for slowing your output are mostly dairy products, the best being cheese, jello puddings really work well. 2 of those and i can usually get it slowed quite dramaticly. Also smooth peanut butter, have found i have to get the amount just right or it slows to nothing, which is painful as well as you dont want it getting backed up. Hope this helps some. Kootenay girl.
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I had a subtotal colectomy a week ago after thirty years of severe constipation, adhesions, obstructions and a notably redundant colon that was twisted in every inch of my abdomen. My surgery was done OPEN. I have a vertical incision from right beneath my ribcage all the way to previous bikini incision. Negative..it was the most intense surgical pain I've ever woken up to but they kept me in recovery for hours to tweak the right pain combo for me. I will not lie, the first day and night were bad but I was up the next day walking. I had catheter removed 24 hours later and asked to be disconnected from the pain pump the following day. Two days later I started liquid diet and third day I was on full liquids. Day four I went to a bland diet. I am wearing an abdominal binder, my surgeon wants it on at all times for a month but how's this for encouragement...I had surgery on Friday morning and was discharged Tuesday afternoon.  I can already tell this surgery was the right decision for me as I feel and look healthier in only days. I have surgical pain but it is not as bad as the pain I'd been living with for years. I can see why it's important to have a skilled surgeon as this is a very detailed procedure, especially if your colon is embedded or fused onto other organs. If a group of skilled physicians say it's a wise option for you, pray about it and if your gut says go for it, go for it! it.  I would do it again if I had to make the decision!
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im having my colon taking out tomorrow and i will be wearing the bag ,,, i want to know with the bag will u have to watch what i eat and will i loose weight?
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I had a total colectomy 15years ago for treatment of ulcerative colitis and was left with a ileostomy for approx 6mths before it was reversed and reattached to rectum. I had to be very careful about eating anything that was difficult to digest - nuts, popcorn etc. Also had to minimise anything that caused a lot of gas as it would make the bag balloon and become very irritated very quickly.

I don't remember specifically if I lost weight afterwards as at the time of surgery I was severely underweight. Recovery was difficult initially as my remaining small intestine perforated, leaving me with peritonitis (a 14yr old trying to convince a nurse something had "popped" inside me, needless to say she didn't believe me and it wasn't discovered for days)

Since surgery my BM's are loose, at best. Suffice to say I haven't had a solid BM in 17yrs! I go approx. 6times a day, sometimes more/less. My specialist suggested I take Imodium daily, but to date this has not heped.

Because of the amount of scar tissue inside, I have had several bowel obstructions, the first being in 2003 which required surgery to repair yet another small bowel perforation. Subsequent ones were more "partial" and treated by pain management and bed rest, only taking cear fluids.

Not sure if my story will help anyone, but I wish you all the best of luck!
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Hello,
I've had a total colectomy 30 years ago and was well for 27 years following the operation. I'm having a few complications but I must tell you that living 28 years without pain was wonderful! As for the scar, I heal very badly and my scar is quite large but I have never had anyone bothered by it- When you're healthy and happy, people will notice your smile, not your scars :)
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they have a mederson called wecol i have conic bowel movements every day of my life i have chorns,whem my colon starts to act up i take this mederson and it sure does help me
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Hi all hope everyone is well,   I am a newbie and my first post so please bear with me.  I wanted to find out other people experience with having a total colectomy.  I have had a removal of the entire large colon in end of july 2012 having got through the most worst part of my life, things have settled down apart from having a numb crotch on one side very weird something to do with damaged nerves i am told, the pain seems to be quite severe all over my stomach area then i get this burning kind of pain on pelvic area and like i am being stabbed with a knife from within all sounding odd, getting alot of backache, whole body aching maybe the cold weather now is not helping dont know, from my info above is this all normal ? last time i spoke to the someone in hospital everything was about wait and see what happens so not very helpful really   i am taking parcetomal and codeine however my gp thinks i maybe getting addicted to codeine and is trying to get me off them without the painkillers i would not be able to sleep as the pain gets worser at night has this happened to anyone ?   Now i have had the surgery what can i expect in the future ? constant pain ? bodyaches and tiredness ? going back to see the nurse in march 2013 something about putting a camera through the mouth the surgeon i saw in outpatients was very vague so not really sure.  Th surgery has knocked me down for six really and i have been strong but do have my days where the reality of my illness hits me and i breakdown feel alone and no one understand what i am going through so thought maybe i can share my experience and maybe get support on here.   appreciate the advice keep well missykay

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Hi, My brother is facing a total colectomy, is this the surgery that you had? I was a bit confused from your post as to what surgery you had, but think a total colectomy is what you are referring to. His condition is that he has had colitis/chron's since he was 14 years old. He is 54 now and they can no longer perform a colonoscpy due to the scarring of his colon, the doctor cannot get the scope through. His risk of colon cancer is high as high as 40% after 40 years of colitis, per the statistics--so the doctors are recommending a total colectomy to prevent colon caner. They are suggesting build what they call a pouch out of his small intestine, which sounds great but certainly has its potential risks, they say. Any insgihts, info would be appreciated. Thank you for your time and thoughts. Kelly
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I have lost a lot of weight. I had a laparoscopic colectomy with ileorectal anastomosis surgery at the Mayo Clinic on January 18th. I was suppose to be in the hospital for 1 week and ended up there for over 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. I was on morphine drip and it still was not enough for the pain. It has been aweful. Before the tubes I was throwing up bile.

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.

I am going more frequently (which is great from never going and 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. 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.

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 noses and moving that is a good sign. 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 my body healing.

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Hey everyone. I had a total colectomy back in January of 2012. Leading up to my surgery, I was very nervous and like many people here, I started perusing the internet like mad to see other people's experiences with it. Aside from a small contingency of people who's outcomes were good, most posts that I saw were about bad experiences. I began to get very nervous about what my life would be like after such a big operation. My brother suggested that maybe only people with bad experiences wanted to share their story and those that had good outcomes likely moved on with their life and didn't think to post their experiences. My outcome was very good and I just wanted to share this for anyone who may be nervous who either needs the surgery or who must make a decision on whether or not to have it.

I was diagnosed with colon cancer about a year and a half ago at age 38. I had a flat polyp in my colon and they couldn't be sure that they removed it entirely, so they told me that I would need surgery to do a hemi-colectomy. Due to familiy history with colon cancer, they suggested I get a genetic test done first. The test result was that I also have Lynch Syndrome, which I never heard of before, but now I was told that due to the very high risk of repeat colon cancer in Lynch patients, that I would now need a total colectomy. I'm sure most of you here know what Lynch is, but for the sake of those that don't (like me at one point) - I wanted to briefly explain it the way it was explained to me by a geneticist.

Your genes replicate all the time (skin cells, blood cells, etc...) and generally the reproduction of the cells follows the genetic code perfectly, but on occasion there's a mutation in the code. Your body has these wonderful things called Mismatch Repair Genes (MRG) who are called in to fix any of these mutations as the occur. They fix them and you go on living, none the wiser. People with Lynch have one or more of their Mismatch Repair genes turned off, which means that if a mutation occurs, the MRG responsible for fixing it, can't fix it. Left unchecked, gene mutations can turn into cancer. That's why Lynch patients have a higher propensity for all types of cancer, mainly colon though.

I tried going into the surgery with a positive attitude not knowing what to expect afterward. The surgery went very well. I had an open colectomy - so I have this big 17" scar up my abdomen. The surgeon also removed 103 attached lymphnodes. Everything came back clear - meaning no cancer. I did have a rough hospital stay, was in there for 9 days afterward. A lot of nauseau and vomiting and trips to the bathroom, but that was mainly due to my gallblader who didn't want to behave after the surgery. I didn't need a colostomy bag, which I was very nervous about, so that was a huge relief as well.

I went home and was told that I would likely be out of work for 4-6 weeks for recovery. I was back to work within 2 1/2 weeks of my surgery (That includes that 9 wonderful days in the hospital).  Today, I physically do pretty much everything that I could do before the surgery. I run, workout, do ab exercises. I was told that I would have to "Figure" out what I could eat based on how my bowels reacted. I have been able to eat pretty much anything I want, although some things do cause an increase in the frequency and urgency of bowel movements. I'm still working on the diet aspect. I now have anywhere from 5-8 BMs per day. I've tried supplementing with fiber pills, but saw no change. I don't feel any need or urgency to go at night when i'm sleeping. Other than that, I don't really have any other issues with the surgery.

Do to my Lynch diagnosis, I now need to get checked annually from Flex Sigmoidoscopies, Upper Endoscopies, Abdominal Ultrasounds, Skin Checks, among them... It's a small price to pay to ensure a long life of hapiness and good health.

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Hi everyone.. My surgery is tomarrow morning, a total colectomy

 and an abdominal rectoplexy to fix the rectal prolapse .. Im am scared to death! Please if anyone has positve encouraging words .. Please tell me .. Im so scared of this surgery and also what my life will be like moving foward ... 

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