Life befoer and after total colectomy due to colonic inertia

Hello. If I hadn't had the Colectomy, I don't think I'd be around today due to the toxins which were in my system from inability to use the restroom for weeks. It's been 12 years since I had the surgery, & recently I have began to feel lethargic & constipated again. I mostly have to strain to have a bowel movement. That's not normal for me, so I would say I may have come to a point where I have to return to really watching what I eat, and forcing fluids more. I noticed the problem with severe constipation over 25 years ago, but Dr's didn't listen, and eventually I gave up trying to get them to listen. I eventually got sicker, & tried another Dr, and then another, finally one whom listened, and referred me to a GI Dr. who listened, then from there to a Surgeon who listened.

Listen to your body and find a humble, yet intelligent GI Dr. with a great reputation who respects his patients, after much prayer to the Creator, and let go of the results.

To all of you that have been through total colectomy because of colonic inertia. I had my colon removed with ileorectal anastamosis at the Mayo Clinic in Minnesota in 1998. The first year was very difficult and every minute I had to be near a bathroom. The doctor told me to expect that.(I didn't complain). The next ten years were really OK, I learned what I could and could not eat and I lived a wonderful normal life. Then I developed SIBO, which has been very difficult, gas, pain, weakness to the point of collapsing and revived by electrolytes. Now I am trying alternative meds (anti yeast ones) which seem to help.

My name is Kathy and I am 41 years old now and your story is amazingly similar to mine except I have way more health issues. I have 19 surgeries to my abdomen due to stage 4 endrometrious. Ihad so much scar tissue damage that the tissue cut and Implanted its self all over my organs. I was eventually forced to have a total histrorectomy. I have had constipation my whole life only going oncea week. The scar tissue cut through my large intestines. I was taking a box of exlax a day to try to go to the bathroom once a week. I am high school teacher and the cramping vomiting and constant pain was too much to handle. Just like you I was doubled over in pain and doctors laughed at me and made me feel like I was going insane. Well one day I was at school and not knowing what happened I passed out. My scar tissue sliced my colon in half and I was leaking gastric tissue through my body and I became really sick really cause I was about 60% septic. I almost died they did the ring test and the bands never moved. I had my large intestine and Colon totally removed and thank God I did not have a colostmy bag. They tied my small intestine to the rectum but I never did fully recover but it is way better than it was . I go to the bathroom about every 3 day but I have lost a total of 8 organs and I have multiple sclerosis. My gastric- Colon doctor said to stay away from pain to avoid the following. Any kind of nuts- raw vegetables or fruits that have seeds- roughage- and any meat that has skin which is about 95% of what Americans eat. I don't stick to the diet like I should but when Iam having trouble I stay away from salads I had my surgery in 2011 and the Dr said over the next couple of years things will get better because your small intestine will learn to take the place of what your Colon used to do. It has done that for me already and it is easier to lead a normal life. Hope the info helped.

 

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Look up CIPO- chronic intestinal pseudo-obstruction- can start in the large bowel, then advance to the small intestine and even the stomach. Caused either by abnormal motor or abnormal nervous system innervation.

Hi, I an 55 just had the rest of my colon remove due to cancer. Dealt with is all my life. 23 years ago I was diagnosed with cancer. Now it's gone for could, no bag. Times have changed and I thank God for the surgeons who know and care. He told me more meals, eat less. It has been two weeks and come bleeding from my incision after one week and 33 staplles. Last time I spent 11 days in hospital no food or water ten of them. One month with staples and afraid to move. Today I need a little help, but grateful no years worth of chemo. Hang in there. I had breast cancer 11 years ago. God has a plan for all of us. I have a quality of life now.

Hello All Of Us Sufferers,

Had a total colectomy with removal of rectum had an awsome procedure called B.C.I.R. BARNETT CONTINENT INTESTINAL RESERVIOR.I GOT MY LIFE BACK . SUFFERED WITH COLONIC INERTIA SINCE BIRTH, NOW 68.HAD IT DONE APRIL 15 THIS YEAR.procedure has BEEN AROUND 30 YEARS, DR'S TOO LAZY TO LEARN PROCEDURE. HAD T O GO TO PALMS OF PASADENA HOSPITAL IN FLA FOR SURGERY.I don't WEAR A BAG. NO ACTIVITY RESTRICTIONS.. NO Leaks or odor problem .dietary restrictions, peelings ,corn mushrooms. Msg me for more info or check out BCIR website before you have surgery
Would do it again in in a heartbest.

Hi Suzmum1,
Im in australia too and also suffer with colon inertia. I was wondering if u went through with the surgery?
Penwahr

So they do this surgery for colonic inertia? I don't see it listed as conditions they use it for on the website.

Try meta fiber cookies!! Had total colectomy for perforated diverticulitis in 2009 and finally after all those years and 15 bm's a day and total blasting watery stool I ended up with several fischers in my anus. The doctor I saw for this knew exactly what I was experiencing and told me most fiber supplements would not work for me (they didn't). The fiber cookies have changed my life for the better!

nurse_Jenn1564 : I just read your entire situation. AND I AM EXACTLY LIVING THROUGH YOUR SYMPTOMS & LIFE OF SUFFERING PRIOR TO YOUR SURGERY. I NEED HELP FOR MY COLON SO BAD, MY LIFE IS COMPLETELY ON HOLD BECAUSE I AM SO SICK ALL THE TIME- CONSTIPATION, LAXATIVES, NAUSEA, BLOATING, FATIGUE, ABDOMINAL PAIN. I WOULD LOVE TO KNOW WHO YOUR DOCTOR WAS??? I AM SUFFERING EVERYDAY THAT I GO WITHOUT ANYONE TO AGREE TO HELP MY PROBLEM! PLEASE send ME ANY INFO YOU CAN & THE DR YOU USED! I WOULD APPRECIATE IT SO MUCH. I JUST WANT MY LIFE BACK:(. THANK YOU & GOD BLESS.

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valfo. im in adelaide. severe bowel inertia. at the end of the line. trying to outsource a recommendation for experienced surgeon in this specialty. any suggestions would be greatly appreciated

To all who will read this and have been here already. I had a sub total colectomy in 2006 for colonic inertia. I had a follow up surgery 18 months later due to intestines tying themselves into a knot. For the first time since then I am experiencing issues. I have 3 areas that have collapsed from scar tissue at the original rebuild site. I encourage anyone thinking of having this surgery to proceed. It gives you a much better quality of life. My story is exactly like all of the above. I live in the DC area. The best treatment you can get is at the Washington Hospital Center. I will undergo surgery again next week to fix the scar tissue issues. The best diet I have found is to avoid :all bread sources, red meat, chicken and pasta. Be careful of raw fiber from vegetables. Find a surgeon with LOTS of experience and get your life back.

I am 30 years old. I have had bowel issues since birth, starting with the need for Caro syrup in weekly bottles to my pediatrician showing my mom how to stimulate my rectum with a thermometer to help me go. She said that even though she had to use stimulation my stool wasn't always hard. When I was 17 years old I ended up in ER with horrendous stomach pain. Being a young healthy female the first exam they performed was a pelvic one. With normal results they had moved on to an X-Ray that showed my colony full to the max of stool. That was my turning point. Over the last 13 years I have struggled with constipation. Dr after Dr telling me I have IBS. 9 years ago the bleeding started, I haven't gone to the bathroom once in the last 9 years without the aid of laxatives, enemas, suppositories and even 4.5 years on 2 different Rx medications. And EVERYTIME I've gone to the bathroom in the last 9 years, whether I have a BM or not, it looks as though I'm on my monthly cycle. I have had 5 colonoscopies (none of which I was completely cleaned out for due to being so full of stool), 2 sigmoidoscopys, upper GI w/small bowel follow through, X-rays and ct scans. I've had 3 biopsies come back with a positive pathology report for Ulcerative Colitis... Of all things!!!! Aren't ppl with IBD supposed to have chronic diahrreah?
Seriously? Stop telling me it's IBS. Several tests have come back showing that I have an abnormally long colon. Finally it January of this year (2016) my OB performed my annual exam and found a bowel prolapse, he also completed surgery to removed several ovarian cysts and polyps. Afterwards he made the comment to my husband that I have the largest colon he has ever seen, at my follow up we discussed the past 13 years of my life and he referred me to the University of Michigan to see a specialist. The specialist first treated my Comitos with steroids (I gained 45# in one month!

Forever I felt alone in your/this struggle. Raising 4 girls.. no support and no time to be sick. To make this short... saw Dr after Dr....nothing wrong.. did colonoscopies and removed polyps ...that did not help and each time the procedure was a worse. Of course I kept losing weight... I'd eat laxatives like candy and get sick. My boss paid for a specialist that my Dr wouldn't refer me to. Immediately it was swallow a capsule with rings....x rays days apart....never f did they move through my intestine. Off to Cleveland clinic immediately... testing and immediate surgery. Sooo thankful... I was lucky at the age to be able to be reattached...no bag. My Dr told me to take metamucil to lessen the frequent trips to the bathroom. 14 years and I would NEVER go back...Dr. Senagore is my hero. I came on looking today as I have been trying paleo... lots of raw vegetables.. nuts and serious pain....can I use laxative but heads up if you had this surgery and feel safe due to time.....14 years later.... ouch ....I had 4 girls natural child birth.... Be careful