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On 6/22/10, I had a total colectomy due to 8 years of suffering from colonic inertia. I wanted to write this article to inform others that they are not alone, and to get some feedback of how others have done since having the same procedure.
I am a 27 yr old female. I have always had problems with constipation, but when I was 19 and in nursing school, I quit having bowel movements without the use of multiple laxatives. I can't tell you over the years how many times I went to different doctors and got laughed at like i was being a hypochondriac or told that I was "just constipated". I was 125 lbs and working as a registered nurse and otherwise perfectly healthy. Except that I stayed tired, nauseated, would have severe bloating and abdomianl distention and pain everytime i ate. I could not find a doctor to take me seriously. Some doctors said I wasn't active enough (ha ha) or that i needed to change my pretty much already healthy diet. I have been on every diet known to man., Nothing helped. I was put on hycosamine, zelnorm, protonix, pepcid, amitizia, all the fiber powders, etc etc. Nothing helped me.
In 2008 I became pregnant, which only made my problems worse. I vomited all the time, and had to be in the hospital several times for abd pain, dehydration and nausea and vomiting. Of course they blamed it on pregnancy. All the while I was unable to take the majority of the laxatives that I had previously used to get some relief. Before i got pregnant, I was taking about5-8 bisacodyl (dulcolax) extra strength tablets every 1-2 weeks for a bowel movement. I would have to plan this around work so I could sit at home and do nothing but cramp, sweat, and cry all day until they worked. SO when I became pregnant it was to harmful to my baby to do this. I was sent to a new GI dr referred by my ob/gyn. She told me that it was okay to take the bisacodyl while pregnant but I had to throw enemas in there as well. Still this provided very little relief.
After I had my daughter, I pretty much gave up on finding a doctor to help me. I was so sick, and soon, was unable to get cleaned out and was vomiting again. So I had to go back. I chose a random doctor off the internet in the biggest city closest to me (lexington). After spending 20 or so minutes talking to me, he frowned and said, "you have colonic inertia, and you are very sick. I believe you and I am going to get you some help." He referred me to a colo-rectal surgeon that day. I have to thank God for these people who actually listened to me and took me seriously, i broke down in tears of gratefulness.
I had a couple of tests, the most helpful being the sitz marker test. you swallow a pill that has 20 rings inside on day 1. they x-ray your abdomen at day 3,5,7 to see where the rings are in your digestive tract. This helps them to determine what part of your bowel is the problem. My rings would get through my small intestines and stop. Nothing was traveling through my colon (large intestines). So my surgeon discussed with me having a total colectomy. I was a little freaked out but to be honest I was asking him "how soon can you do it?" I was so relieved that I wasn't going to have to live like this anymore.
I will admit, I did have quite a few complications with my surgery. I did not have to have a colostomy, thank goodness, many people who have this surgery do. But, I had alot of chest pain that proved to be "trapped air" due to my procedure. Evidently they fill your abdominal cavity with air during the procedure to displace the rest of your organs so they can get to your intestines. And that air, sometimes retains inside you. Mine did so in my chest cavity and the pressure was almost unbearable. It went all the way up into my neck and felt like when you have slept on your neck wrong. I couldn't even turn my head without yelling out in pain. I was given large doses of Valium to knock me out because they said there was nothing they could do until the trapped air dissipated on its own.
Then I started losing alot of blood above my incision site and required several blood transfusions. I was incontinent for the first 4 days and that was humiliating to me. And the stools were large amounts of watery, bloody diarrhea. But after 4 days I was able to control them. I had almost 15 bm's a day for the first 6-8 days.
U developed pneumonia while i was in the hospital and had to have a rectal CT with contrast to make sure that my anastamosis was not bleeding. All in all, I spent 9 days in the hospital. I didnt feel like I was anywhere near ready to go home when I did, but I certainly was not getting any better there.
I was given very little information about what to do with myself once home. As far as diet, my surgeon told me to eat whatever I wanted that my body would let me know what I could handle and what I couldn't.
Now it has been almost four weeks after my surgery. I am now able to walk without my walker but still tire very easily. I get dizzy and light headed when I stand up and cannot sleep on my side, it hurts and feels like that my insides are being pulled tight. I have about no more than 6 bm's a day that are loose and muddy. I have not figured out what I should and should not eat yet. My doctor wanted to put me on Questran to thicken my stools, but I threw it in the trash. My biggest fear is getting constipated again even though he assures me that is not going to happen.
I know all this sounds so negative, but honestly, I AM SO GLAD i had this procedure. It was all definitely worth it. I am so grateful to sit down and be able to have a bowel movement instead of what I was going through before. I would like some feedback though on others who have had this procedure done. I would like to know if the symptoms I am having post-operatively are normal. I hope this article helps someone. I wish I had known what to look for in the last 8 years of suffering. I had no idea this kind of alternative existed.

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Hi Jenn,
I had a total colectomy with ileorectal anastamosis in Dec 2008. For the next 10 months I was mostly sick, in and out of the hospital, doctors had no clue what I should eat, I kept getting dehydrated etc. In Oct 2009 the Lord healed me suddenly - no meds now, no hospitalizations since then, I'm 60 and I've gone back to school and often take care of my grandchildren, it's a whole new life.
Part of the healing was finally understanding what I can/can't eat. This is probably different for everyone, but here's my list. Everything I eat has to be low in fat/sugar/caffeine/lactose and most of all: fiber, and small portions. Main things I eat: homemade sourdough bread, potatoes and sweet potatoes (no butter), lowfat yogurt/cheese/cream cheese, canteloupe/canned light peaches or pears/frozen mango (I put the fruit in a jello with extra gelatin so it's not real sweet), eggs, chicken breast cooked as soft as possible, plenty of decaf tea w/ honey and lemon. no vegetables, no other fruits. Things I eat that I probably shouldn't: dark chocolate, instant coffee (in yogurt), natural lowfat peanut butter. When I stray from my rules I pay for it with bloating, lots of middle of the night diarrhea and painful rash. I don't know why it's middle of the night, but it is.
The only way to really figure out what foods your body can handle is to fast for a few days, then very slowly add foods, only one new one every few days, so you can actually tell when you have a bad reaction to a particular food. After several months you might want to try a 'bad' food again, it might be okay then. Hope this helps.
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Hi Jen, I just found your post after searching for life after total colectomy cause I am going in to hospital in a fortnight for a iliostomy prior to a total colectomy for colonic inertia. My surgeon is wanting to do it in two parts cause tests have shown that my small bowel and stomach may be affected too and a colectomy isn't reversible so a iliostomy will give an idea of the success of a colectomy. My story is much like yours with a life time of constipation, sweating, pain, bloating, weight loss, weight gain, Drs advising increase in fibre, water, excercise, laxatives. Like you I have tried every laxative, enema, diet you mention it. I have some relief from bisocdyl but only if I use massive doses and not too often. Also fleets for bowel prep but once again not too often and never gives a full clean out. I am at a bit of a loss to find someone who understands cause everyone has been constipated in the past but this is beyond anyones comprehension including Drs and even GPs don't understand. I am a nurse too. I am now 30. A surgeon first suggested a total colectomy a few years back but said I wouldmost likely be infertile afterwards so I refrained until now and I can hardly bare it any more. I have persisted with four pregnancies and have four beautiful children but that was such hell everytime and so embarrassing when I had to be treated with four enemas and two litres of bowel prep everyday for six days straight with one pregnancy before a result.
Anyway I am looking for some feedback on life after surgery for you now that it has been a few months.
do you maintain a healthy weight?
What is your diet like now?
do you get much warning before you need to go to the loo?
how was recovery from surgery?
Do you still get that horrible sweating/ pain/ vomiting ever?
Do you ever get constipated now?
Are you glad you had the surgery?
have you heard of any alternatives?
do you know anyone else like us?
I am in Australia and don't know anyone with this problem but then again it isn't the sort of thing you mention to people.
most of the time i feel really well but I think I have lived with it for so long now I don't know how else to feel so surgery seems pretty overwhelming at the moment and I am seeking some reassurance. I am slightly overweight at the moment too and want to know if having a clean bowel will help with my metabolism as after four babies close together I want to start feeling like a yummy mummy again.
Please let me know
Suzmum1
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Hello,
I had a total colectomy in 2004 (first colon surgery in 2000 - 20 years old) and after my second surgery felt great. Was going to the bathroom up to 15 times a day but gradually that got better. After my surgery I have had two children, now I find myself constipated when I eat carbs, and get bloated too. I am going to see a nutrionist to see if I can create meal plans that would prevent me from feeling this way.
Nurse Jenn - your story sounds just like mine, I was 20 and going to the bathroom only when taking laxative and the pain was horrible. I had the same tests you did and the surgery was definately major, there was a time during my second surgery when I was in the hospital when I did't think I was going to make it! But definately the best thing I ever did!!
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Hi. Reading some of the articles with disappointing outcomes to total colectomies, I felt I should let you know about my totally successful colectomy many years ago. Don't be discouraged if you need to have this surgery done, there are many cases I know of where things have turned out really well. At 59, -10 years ago- I had this surgery after years of problems with my colon. Many doctors refused to accept I had a real problem until I insisted on seeing a colon surgeon. He immediately arranged for a specific test involving bowel evacuation before an Xray machine.
Then surgery was recommended. The outcome was laparoscopic surgery removing the colon and releasing adhesions. Luckily my rectum was healthy and I did not need to have a bag. I did however have a toxic megacolon. No wonder I was ill! If you really believe you have a serious problem, and you look after yourself as well as possible, then do not hesitate to insist upon a referral to a surgeon. I however, am in Australia, so I am not familiar with procedures elsewhere.
Following my operation I recovered fairly quickly and had no more than 3 - bowel movements a day after about 3 weeks. Since then it has all settled and now have 1-2 bm's a day - quite normal. Pain and swelling have disappeared and life is worth living again! I make sure I eat well. Small meals 3 times a day with sensible snacks in between. No fermentable fibre, no red meat, but that may be just me. Not too much fruit. No green leafy vegies, but plenty of root vegies - potato, pumpkin, carrot (not raw). No whole wheat or grain breads. Brown rice cakes are great. A sensible diet and healthy lifestyle is just common sense. No alcohol, sorry!
Try things and see what suits YOU.
Good luck to you all and remain positive - the outcome is well and truly worth it.
Valfo
:-D
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Hi, im 19 years old and just had a partialcolectomy done about four-five weeks ago. My promblem with my bm's has been treated. But leading up to my surgery I slowly had to take things out of my diet because I would get terrible cramping and wasnt able to have any bm's whatso ever. I got to the point where it was all I could do to keep ensure down i would throw up everything and it was awful. I kept dropping more and more weight. I have now had the surgery and was in the hospital for a week, and was in a ton of pain because I dont respond to epidorals or any other pain meds so the pain was unbearable. Every time they would try to have me eat I would get super nautious, and a few times I ended up throwing up which hurt a ton. Also while I was in the hospital I started developing pnemonia which led to alot of breathing problems. They decided to start me on a type of water pill that was to hopefully clear out my lungs. It didnt completely clear up before they discharged me from the hospital so I was pretty scared to go home because I'd be on oxygen. I than got home and my surgeon didnt really give me any help on what to eat whatsoever he just said eat everything but red meat and you'll be fine. Once I got home I would try to eat and i'd have so much pain and I would just lay there and cry due to the pain, and threw everything up. I started eating baby food, and drinking jello(just not letting it set up)But I knew I couldnt live on just jello and baby food. So my mom took me to a nutritionist and he is a great doctor, and has advised me on a diet for two weeks of just fruits, raw vegis, noodles and breads. So I have been trying it out and raw vegis kills me like no other so im not able to eat them. I am pretty much stuck with eating maybe a half of a banana, a few bites of noodles, and just whatever I can think of that will be softest of my stomach but that goes with what he wants me to eat. But even eating that stuff I get a ton of pain. I am maybe getting 100 calories in a day if that. My energy level is close to nothing I cant get off a chair with out help, and I have to always have someone with me, because I cant walk on my own at all. I constantly have to have assistance. Im at the point now where I cant even lift my legs up onto the couch or as a matter of fact not even when I walk. I need any help that I can get for ideas to get to the point where I can eat without such awful pain. Im 5'6" and normally around 120 pounds and super athletic, and now im down to atleast 90 pounds
I need help please!
thank you so much!
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19 and need help,

I had my colectomy Feb 23/11 and every day I am doing a itty bit better.

Same thing for me and my doctor put me back on a liquid diet. Everything liquid, so I drink Boost everyday for my protein and nutrients, milk shakes, puddings,yogurt, V-8 juice for my veggies, fruit juices. I can tolerate oatmeal and scrambled eggs, bread and crackers as long as I drink lots with it. Pasta is getting easier to handle. I also have anti-nausea meds and pain meds on hand for if something doesn't agree with me. I am no longer loosing weight and just maintaining my current weight on this diet. I do try every few days a more solid food. My doctor is amazing, and understanding. He believes my system is just very sensitive to food after having the colon removed (I had chronic life long constipation and I am 33). Each day it gets better for eating, and I am really hoping I can resume a full diet soon! (I love salads and fruits and veggies and i can't eat them yet!)

Try liquid and slowly introduce solid food. Give your system a chance to heal!
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Wow, I do not even know where to begin.  I have had severe constipation for the last 3 years and am in total discomfort, to say the least.  I have been in and out of doctors, hospitals, taking all laxative available in and out of stores.  CT's, X-rays, Blood tests, and the pill with contains little discs to see if the colon is moving.  Laxatives, salines, prescriptions and nothing helps.  It doesn't even have results anymore.  I went to a new GI doctor 3 weeks ago and he told me that I was constipated (NO sh*t!--Sorry, it's frustrating) and needed to take laxatives and enemas.  I broke down and cried.  I was really sick and I wanted someone to really see that.  I felt like I was just eat up with cancer and no one could find it.  I then talked to some coworkers who said to talk to my OBGYN.  I made an appointment for the following week.  My OBGYN said that I had scar tissue that has grown around my colon making bowel movements almost impossible and that a small surgery laparoscopy would fix it.  I was so thankful for someone to finally tell me that something would work.  I had just started a new job and could not take off just yet, but was eager to get it done as soon as possible.  This week, I received a letter in the mail from my GI doctor and he said that after reviewing my tests and results that a colectomy would be the answer.  I do not know what to do.  If a small surgery like a laparoscopy would fix it forever, I want to do that.  If the scar tissue can come back, I want to do the colectomy.  I do not want a colostomy bag, but I don't want to feel like this anymore.  I got my regular family doctor to get me adapex just so I would not feel like a fat cow and I would have good days.  It is hard to eat and put more in your stomach knowing that it is not doing anything, but piling up.  The adapex reduces my appetite and keeps me somewhat thin.  I am only 24 years old.  I am a single mother with a 2 year old, work full time, and go to school full time.  I don't want to feel like this anymore.  I want to look good for my boyfriend.  We are moving in together next week.  I cannot feel sexy if I am constantly bloated and think that taking off my clothes just looks disgusting.  I am torn between these two surgeries.  I just want it to all go away so that I can live a healthy life with my family.  Please help me and give me your advice on what it is that I should do.  I need to schedule either surgery soon so that I can be on the way to recovering.  Thank you for whatever advice you can offer me.  
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Hi I had a total colectomy five weeks ago and had to have an open procedure because the surgeons ran into trouble with the laporascopic procedure. I now have a virtical scar up my abdomen about 25cm long but the problem is fixed. I can poo!!! I had a procedure a few years ago to eleviate adhesions around the bowel when I had my second child. this made no difference at all to my chronic constipation problem. I had a week in hospital, I am still sore some days but I expect that recovering from something this big will take time. I have four kids now and am able to do pretty much normal duties now only five weeks afterwards. I'm glad I had the big op. Hope this helps and you make the right decision for you.
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I am so glad I found this posting.  I have been suffering for years with chronic constipation.  Actually, as long as I remember.  I need HELP!!! Sometimes I take cleanse pills long term and that helps for a period of time. I have tried probiotics.  Actually, I havent had a bowel movement on my own in...... I can't remember the last time I actually had a bowel movement without forcing it with laxatives, cleanse pills, or something like that.  I get really bloated sometimes.... I retain a lot of water when I'm constipated... Sometimes I find something that works for a period of time, and then it goes right back to severe constipation.  I need HELP.  I would love to have a surgery that would cure me.  I don't want to spend the rest of my life spending money and time trying to figure out how I'm gonna poop this week.  I'm sick of it.  Iwent to the doctor before, and he told me to eat more fiber.  I was so mad.  Fiber doesn't help.  Sometimes it makes it worse.  Anyway, I'm gonna find a real doctor to help me.  I want to get tested.  I want to get treated.  I want surgery if necessary. 
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Hello Kitty,

Try seeing a GI that specializes in Constipation or a colon surgeon that specializes in Constipation.  After suffering for 20 years, I finally found a GI that said, no this is not normal!  After trying to treat my constipation, she sent me to a Colon clinic in Orlando, to a doc that specializes in Constipation.  I had numerous tests - Colon transit study, mamoetry, Defecograghy and another one.  It showed that My rectum was fine, but my colon would not work.  That led to a total colectomy with ileo anal anastomosis.  No bag!  It has been a hard recovery for me (due to other medical conditions) but I am so grateful I had the surgery!

Try and find a doc to give you these tests, then you can go from there!

Best of luck
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I have had chronic constipation all of my life.  I was anorexic and bulimic from age 16-21 and thought that my addiction to laxatives had somehow made it worse.  However, after stopping that lifestyle, there was no improvement.  At the age of 28, I was pregnant with triplets and that definitely made things worse.  I did not have time to worry about it and then found myself pregnant with my last child four years later.  After his birth, I started at the gym and was seeing a nutritionist.  After being placed on a 900 calorie diet and still gaining weight, being bloated, etc. I finally went to see a GI doctor.  I tried all the drugs like Zelnorm and the like, but nothing worked.  I was on Miralax twice a day and had to take Ex-lax up to 4 pills a day just to hopefully have a bowel movement within 7 days.  I would go up to three weeks with no bowel movement.  The first GI doctor I saw did some test that you have an x-ray and then take a capsule with rings and have another x-ray five days later.  During that testing time you are not allowed to take any type of laxative.  The test showed that the rings stayed in my large intestine and did not move.  This doctor told me I would just have to live with it and there was nothing I could do.  I went into Beth Israel in Boston and saw another GI who did all sorts of tests which showed no abnormalities.  I was finally sent to the surgeon for a total colectomy.  The surgeon told me preop that she was probably going to go in and find absolutely nothing wrong and end up closing me up (It was all in my head).  I had the surgery and to her surprise my large intestine was totally dead.  I had great results for about three months postop, having bowel movements about 3 times a day.  However, six months postop, everything was the same as it was before.  I still suffer from severe consiptation.  I have to pick and choose when to eat as my digestive system is screwed up.  I was sent for an barium test, which showed that I had little to no motility in my small intestine for unknown reasons and my stomach, although it worked, was within normal limits, but slow.  Therefore, I still am plagued by chronic constipation.  I only have to take laxatives every once in a while, but what I am most bothered by is the sound of air on a constant basis and my stomach has got to be the loudest stomach in creation.  It wakes me from my sleep.  Not to attractive.  Any ideas out there?
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Hey my name is Bridgette I am 31 yrs old and have been dx w colonic inertia. I am a mother of three. I have been trying to put off surgery b/c it is such a major one and the recovery time is so long. I will have to say I am at my witts end. I recently had my GB out and had some improvement w bm's that lasted prob 3- weeks. I am now back at square one. I have been doing multiple enemas suppositories just finished 2 bottles of mag citrate which gave me very little relief. I have allot of abdominal pain bloating and nausea. Just wondering if life after surgery going to be better then life before. Any suggestions?
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I also went to doctors my whole life for constipation. They always told me to eat more fiber and drink more water. I would get sluggish and tired. Sept 2001 (i was 31) I was admitted to the ER for extreme abdominal pain. THey thought it was kidney stones till they did a cat scan and found a major blockage in my large intestine. I had to have emergency surgery, and lost a foot of my bowel. I had a colostomy bag for 4 months to find out what the cause of everything was. They did the transit time test and Bingo, Colonic inertia. THey decided the best thing for me was a total colectomy with anastomisis to the small bowel. Once they did the resection, i had runny stools for a couple of months. But, i noticed if I ate a banana or rice, i would get constipated. Of course, the doctors were like, you cant get constipated...Boy, i have to laugh at them. I have tried everything. What worked for me for several years was small meals and no rice or babana's and watch my pasta. I had a small bowel obstruction in 2004 due to scar tissue. Then, in 2008 i had to have a double Hernia surgery with mesh at my previous colostomy site. For the next two years, my small bowels have been slowing down also. I tried amitiza, myralex, anything and everything. The best thingfor me is the Plum Juice. Not too much, but about a bottle every two days. I see a specialist each year, but she even states that one day i might loose all motility in my small bowel. My last cat scan showed my small bowel is becoming a Psuedo large intestine. Just this last year, my hernia returned so i had to have that fixed again. I do have to say, my quality of life is so much better even with all of the things i have gone through. I would do it again. If anyone has any new info on colonic inertia in the small bowels or why my small bowels are not working, I would truley appreciate it. I am always researching things, but i only find information on sites like this. So i thought this time i will post.  ***this post is edited by moderator *** *** web addresses not allowed*** if anyone has information for me or needs an ear. I have been through the gammit, and if it can help one person, it will be worth it. 
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I hope you are feeling better these days. I too had a full colectomy in January 2010. I continue to have eating issues. There were complications during my surgery and my stomach was punctured. I became septic, and the only thing to do was to give me a collectomy bag. I wore it for 6 months then they reversed it. I have avoided dairy, citrusy fruits, almost all meats. I continue to get bacterial infections in my stomach. I have severe stomach pain most of the time. I would love to know how you are doing these days. I moved away from where I had the surgery and my new Dr. doesn't know what to think of me. I'm 36 and I have loose bowels at night, not to sexy. Thank you for your story. I'm hungry too:)
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