TOTAL COLECTOMY SURGERY

I had Colon cancer about 6 years ago and had to have a full Colectamy right away. I had to have a collosstomy bag for about 8 months while taking Chemotherapy. The bag was removed and I am grateful for that. If you have to have a bag find a very good nurse to teach you proper cleaning and replacement. I consider myself lucky even though I was 32 when this all happened. For the most part I consider life normal. I do go to the bathroom 6-8 times a day depending on what I eat and how often. I am told drinking alot when you eat can cause you to have more frequent BM's. This is because the colon's job is to extract water from the stool or waste. I think some fiber products are used to bulk the stool up. I believe the worst part would be the time when your body is trying to get used to not having a colon and you have 20 BMs in less than a day. The anal area can get pretty raw but there is a heilpful ointment called Calmoceptine. It is a scary time and making the right decesions are important. I would also recommend finding a doctor that has experience in performing the procedure Laparoscopy. When the doctor removed my colon he started doing it laparoscopy, but had to make a larger incesion because the colon was punctured. If someone is wondering weather or not to go through with this I can't answer this for you, but I can say that I feel that my outcome has been a postitive one.

i had a total colectomy 12 weeks ago and i have suffered with persistent nausea and vomiting for over 6 years. i also have gastroparesis which is paralysis of the stomach. i underwent botox injections into the sphincter of my stomac so my food would stay down and not come back up. after suffering with this and being in the 70 lb. range i found a doctor that puts in gastric stimulators. that worked a while but i have had to have now 3 gastric stimulators due to the battery running out and theyhave to replace the whole entire stimulator. the stimulator is placed in the lower abdomen and then you are cut up the abdomen and your stomach is removed and electodes are sewn to the stomach and it shocks it to get it to empty. i have continued to have nausea and vomiting and extreme pain and on 25 medications. i started having severe bloating and no bm's without stimulant laxatives and senokot which my doctor prescribed. i had the sitz marker test and found out that the 20 rings never made it through my small intestine or colon.i also now have problems with my kidneys and liver from continuous medications i am on and see many doctors. i now swell continuously and have to take potassium all the time to regulate my electrolytes. i swelled one day and ended up having a stroke also. i have been hospitalizes so much for persistent nausea and dehydration and potassium problems that i require a picc line ( that is like an iv line but it is put in a deep vein and then threaded into the heart). i have had now 10 picc lines and 2 portacaths. i have been septic twice and have had 6 blood clots in my left arm and i had a blood clot go to my lung which caused a pulmonary embolus and severe scarring to my lungs. i underwent a total colectomy on 10-6-10 and did well after surgery but now have developed malabsorption syndrome due to the only part ( a small part of my small inestine was left only due to such a big megacolon and paralysis)of my small intestine left has not taken over and is not doing its job still. i have lost 35 lbs now and have continuous dumping syndrome. the severe pain with the colon has gone awway but not the pain in the stomach from the gastroparesis. i just found out mygastric stimulator does not work anymore and also needs to be replaced. i have a warning to everyone to make sure you check out your surgeons very well. my first surgeon who has performed three gastric stimulators had me on the medicine Reglan for emptying of my stomach and had me on this medicine for 4 years which i now have permanent dystonias from and have now gone off and am taking a medicine called domperidone which is bought from Canada due to it not being FDA approved for this condition in the U.S.. i just want everyone to know that i have a lot of doctors and have been thru the cracks of everyone of them. it is a constant battle to find a doctor to treat me due to all these conditions. i am trying now to find a good internal medicine doctor and endocrinologist to help me but i have not had any to do that yet. just beware and make sure you have a good internist before having these surgeries because if not you will be put from doctor to doctor with no one to help. it has been so stressful for me and my family due to my continuous sickness. i have missed out on life now for 6 years and i feel so bad because my son was 2 when i got sick and i have been sick now for 8 years and have missed out on so much. so please beware of certain doctors and make sure you really have someone you trust and that they will be there for you when you need it. any suggestions on what to eat after total colectomy? i still cannot eat or find foods that do not cause dumping syndrome. please contact me if you have any questions. i really would like to help others to keep them from having the mistakes that were made to me! :-( >;) !i am only 34 please read this with caution!

My name is Jessica and i am 22, I was diagnosed with ulcerative coloits when i was around 13 years old, which God healed me of. I then developed proctitis and then no bm at all! i am bloated 24/7 tired very easily and pretty much feel like c**p. my dr. is referring me to a surgeon for a total colectomy. im wondering, what is the prep for the surgery like? and what is post-op like?

Hi ccgjbg and everyone else,

I am having a total colectomhy on April 5th and I am scared to death. I am a RN, but it still scares me. I have colonic inertia and I am unable to have a bowel movement and I get impacted all the time. Laxatives and meds are not working and so far I only have mag citrate left. I am scared because I have gastroparesis and a gastric pacemaker. I am scared that this surgery might damage my pacemaker. For ccgjbg, did anything happen to your pacemaker after the colectomy? There are no other options, I just don't want to make the wrong decision. But, it would be nice to go to the bathroom. Any advice is welcome.
Thanks,

I was also recently diagnosed with colonic inertia and am scheduled for a total colectomy next week. I am also scared to death. I am very close to cancelling! I have been so miserable for the last 25 years. I've read so many stories here. I didn't know this site existed, but I'm glad I found it. I guess I just really needed to hear from others. Thanks to everyone. While I'm not a nurse, I worked in the health care field for many years. I think if you've got a really good, competent surgeon, you shouldn't have too many worries about your pacemaker. But, if you're LIKE ME, I just keep calling my doctor and asking the questions I forgot to ask at the consult :-) I'm actually worried about the incision. I am a 5 time cancer survivor, and I have SO MANY scars. While my doctor said he was going to do the colectomy via laparscope, if he encounters any problems, I'll have to have an open, with the incision being vertical. I've had two major surgeries, both with the "bikini" incision, and have healed very well and quick. I'm not sure why a vertical incision would be used, compromising the abdomen muscles? Has anyone had a colectomy with the bikini incision? I wish you much luck with your surgery awesome. I too am looking forward to a "normal" life. While hearing many people now have up to 6 BM's a day, I would LOVE to have 6 BM's A YEAR! I'm up to nearly 5 weeks without any. The pain is excrutiating. Everyone who is awaiting surgery will be in my prayers. This is a silent hell, and I don't feel nearly so alone now. I've already go today's list of questions ready to ask my doctor. Reading the paperwork he sent home with me really frightened me. Five rounds of cancer and I was not nearly as scared. Awesome, I didn't even think "colonic inertia" was a REAL dx! Since we will be having our operations very close to one another, I hope we can stay in touch. Again, much luck, and God Bless.

Hey guys. I was diagnosed with back in 2006. The next 3 years would be the toughest thing i had ever fought. Anyone who has had this or has it knows how horrible it is. Its a nightmare you pray to wake up from. I had it pretty bad. I averaged one bowel movement every hour...and the nights were worse. Sometimes every 10 minutes. There was no success with any of the steroids i was given. Aside from the physical toll it had on me, the emotional was just as bad. I always weighed about 165 and I was down to 117 at my worst point. I often wondered how my body could continue to function under such harsh conditions. Sleeping at the most 1 hour at a time offered little or any rest my body needed. It got so bad that i would just curl up by the toilet and sleep on the ground. It took a while for the right doctor to come along and realize just how bad it was. I spent lots of time in hospitals all over the valley. My longest was a month and a half. They couldnt find a way to keep me stable...and in the end i was pick lined because i just couldnt eat anymore. My doctor told me that I had no choice but to have it removed. I heard him say pre cancerous cells and stopped him and said "take it out"! I was tired of having no life....my life was a toilet and my life revolved around that. I was told the risks and possible complications but anything would be better than the last three years. Surgery is a very scary time. Your mind will naturally fear the worst, but find the best doctors and surgeons...put your trust in them and they will take care of you. My surgeon gave me my life back and i cant ever repay him for that. I thought maybe if i helped comfort someone elses mind about it was a start. Everybody's different. I still have about 4 to 6 bowel movements and about 4 a night. Ill take 8 a day over the 20 to 25 any day. My record is 31...lol. Its been almost 3 years since my surgery and its been a blessing. It takes time for you to adjust to and for your body to adjust. Watch your diet, minimize stress and you can live a normal happy life. I had a piece taken from me but i can proudly say i was blessed with a beautiful daughter after. I cant imagine trying to raise her and enjoy my time with her had i not had the surgery. 3 surgeries should do it. It aint a walk in the park but i had fought to much to not push through it. I hope this helps someone! Good luck to all you.

I had surgery to remove 2/3 of my colon and reattachment of my small intestines to my rectum on 3-10-11. I have had constipation issues for about 30 years. I am 45 now. I went to every Dr. I could find and listened to the stories of how I needed to exercise and eat fiber and drink water, blah, blah, blah..... I did all that and tried every medicine know to man and nothing worked. I finally had a sitz marker test that showed I had colonic inertia. Post surgery was rough. Lots of pain with problems from an epidural not working right and later a morphine drip that just made me loopy. I did have lots of BM's a day (about 10-12) after my surgery, but every day it gets better. You can tell when you have to go, so you have time to make it to the toilet. My Dr. recommend Pepto Bismol 4 times a day and then later 1/2 of an Imodium pill to help with this. At first I was afraid it would make me constipated again, but it hasn't. It just slowed it down. I go around 3 to 4 times a day now and it's only for a few minutes each time. I used to spend hours in the bathroom and I was in lots of pain. It was no life. I can now look forward to enjoying the rest of my life. My scar still hurts, but it's only been a month. I recommend not taking the post-op pain meds like oxycodone. Makes you have bad dreams and I was jumpy, like I was afraid of everything. Besides, ibuprofen worked just as well. I did loose 12 lbs after the surgery and I have now gained back 3. I can see light at the end of the tunnel and it was well worth it for me to have the surgery. I wish the Dr.'s would have listened to me a long time ago.

Hi, I had my colectomy on 4/22. It will be 2 weeks on Friday since I had the operation and I am very happy that I did. It is wonderful to be able to go to the bathroom. The only problems I am having is the severe spasms, but I have some valium to help with that. Can anyone recommend what types of soft foods to eat? I have no appetite and nothing tastes good and I am afraid to eat and get the spasms. Also, did anyone have pressure in the pelvic area? I have a ton of pressure down there, and it isn't the pain from the incision.

Thanks,
AnnMarie

I have had the transit test & I have colonic inertia and need my colon removed. At this time the doctor has me on Amitiza & Senokot. He asked me to read about colonic inertia on the internet I have, then I found all of these stories from all of you, great.  Until I found this I had never heard of anyone having there colon removed. All of you have helped me.  I have not told the doctor I would have this done, haven't talked to a surgeon.  I am 56 years old and I work in a dental office, I am an assistant, so I guess I need to know when I go back to work will I be able to have time to get to the bathroom if I am with a patient. Meaning will I have to run to the bathroom?  I am scared, but I can handle it. I don't know when I will have it done but I guess the sooner the better.  How long can I expect to be out of work? Please help me.

 

hellokittygirl wrote:

Hello, hellokittygirl. My name is Sarah. I had a total colectomy due to UC and am having sharp rectal pains as well. Flagyl and Cipro help a little, but not as much as I'd like. Are you still having these pains? Has anything helped you?

Hi everyone. I was just wanting to get a bit of feed back from anyone who has had a total collectomy. I had my total collectomy in "96" when i was 19. I was never given any information on further ways to treat and care for having my large intestine removed and was never informed to have follow ups and my condition. Bleeding and urgency to get to the toilet has definately been cured by the op but i still have 10 to 12 bowel motions a day and (which is the most annoying) can have up maybe 2 even 3 a night. So basically i always feel i could go to the toilet at any time.

Recently i got in contact with a person i knew who had the same op about 5 - 6 years after myself and the knowledge and infromation he was given to fine tune his bowel motions was amazing. He still take alot of medication and frequent blood tests and check ups. He has 4- 5 bowel motions a day and never goes through the night.

Any information or tips, on medication or how to slow down bowel motions i would be much appreciate of.

Hello PATTYPERYMAN  i'm so confuse and looking for answers i had remove part of my colon early this year and was discover that have Lynch syndrome  that increase the risck of cancer, the surgen  and oncology Dr. both are sugesting that i should go for Colectomy as well as hystorectomy,  the surgery sound ok but  they do say much of what problems i will be facinfg after, then they also metioned that even doing hystorectomy and Colectomy my risk still there.   I'm 47yrs  just overwell with the thought of how is going to be and after reading your story i'm very concern.

Can you please give your advise

 

I had a total colectomy with a J-pouch two years ago, right before my 22nd birthday. My surgeon refused laproscopic because he said it would add 7 hrs to my surgery, so I have a scar that goes half ways around my belly button down with another small one to the side of it from were I had the bag for two months while the small intestine healed. Life after it is sooo much better. In total I had three surgeries, one to remove the colon, one to reconnect the small intestine after it healed and a third a year later for scar tissue removal. While I had the bag I hated it and begged the dr. to take it off asap. My doctor said he would have a dietition come talk to me before I left the hospital, but that never happend, so I learned on my own what was ok to eat and what wasn't. I don't eat anything to spicy or seasoned because it burns when it comes out. I also don't eat to much dairy, salad, runny soups, or to much juice, because it causes me to have more bowl movements. Beans also aren't the best because it causes a lot of gas. At first I had 10-15 a day and questioned whether it was worth it, but its down to 1-3 a day as long as I stay away from the food listed above. I would recommend a colectomy to anyone who has ulcerative colitis, life after gets so much better. Before the surgery prednisone was the only thing that would help calm the bleeding, but I was on it for three years and the dose kept increasing, I started at 5mg a day and by the end was at 60mg a day. I went from 115lbs to 170lbs. I lost most of the weight shortly after surgery, but I am currently 140lbs and loving life.

Any one considering surgery, I wish you the best of luck.

my husband had one a year ago and is now back at his regular weight im trying to figure out if its worth exersizing the ab is worth trying?

Hi, it seems I have the same dx as you. The doctors have mentioned the having a colonectomy, with small intestines attached to rectum. I'm in pain every day. However, worried about having fecal incont afterwards. Did you?