I have been advised to have a colectomy because of numerous (hundreds) pseudo-polyps. I have been screened for a genetic colon cancer gene link and was found NOT to have the gene. Presently I have no colon "problems". I am 61 years old and in very good health. Able to work out daily, play with grand children, bicycle with my husband. I am a semi-retired accountant and work out of my home. Will having this colectomy drastically change my life style? My cardiologist feels my cardio risk is low for the surgery but I should consider how this will affect my healthy lifestyle.
Hm, first it depends how they intend to reconnect your small intestine: to the rectum or toward the abdominal wall (stoma). Next - you can expect having lose stools at least on the beginning, since colon usually absorb about 1-1-5 liter of water. But small intestine should adapt after some time to absorb additional water.
Polyps may be from Crohn's disease, ischemic colitis or Clostridium difficile infection or other cause(?) . You should ask about the casue, they surely made several biopsies. If it was genetic type, you'd have developed cancer in your 40's.
Hi - I underwent a total colectomy four years ago (when I was 58) for torrential diverticular bleeding. You can actually live quite satisfactorily without a colon and my life has pretty much returned to normal. There are two aspects which it might be helpful to share with you as follows:-
aa) my recollections of the surgery:-
- purgative administered the day before
- IV anaesthetic just before the operation
- the operation lasted about four hours
- the wound was 10-11 inches long from the base of the sternum to the pubic area
- I woke up feeling pretty groggy and "beaten up"
- pain was quite well controlled via a spinal epidural
- nutrution etc was administered via IV for ~6 days afterwards
- on the day after the operation a heartless physio forced me to get out of bed and walk around. In all fairness she was probably only doing her job and minimising the risk of blood clots/DVT etc
- some people develop an ileus afterwards. This is caused when the intestines are slow to "restart" following their manipulation during the surgery.
- you may require a nasal gastric tube to suck out stomach contents/bile juice if the ileus prevents these fluids from passing through the small intestines.
- during the period in hospital you are given numerous drugs/injections for all sorts of reasons. Strong antibiotics are given in case of any minor leakage from the newly joined parts of the bowels which would cause peritonitis. If peritonitis were to develop (1-2% - but ask your surgeon) then another operation is required to close the leak.
- if you do not have an ileus you can start to eat after 5-6 days
- if you have healed well you can go home after ~7 days
- thereafter the wound requires careful attention/anti-infection procedures etc
- sutures/staples are removed after about two weeks
- when you go home - no heavy lifting, car driving for ~4-5 weeks. Lots of rest.....
This is a big operation and you will take time to recover. I was back on the tennis court after about 3 months.
bb) changes in life
You will find that you need to visit the toilet for a #2 maybe 6-8 times during the day and 2-4 times during the night. This will lessen as time passes. Your motions may be liquid/runny. I found that a diet with plenty of fibre helped (pulverised fruit, vegetables, wholemeal bread and blend organic bran into the fruit + veg and also into yoghurt). This will help make your motions more muddy/sludgy.
Your motions may be more corrosive so, in order to avoid anal soreness, ensure that the last "toilet paper wipe" is done with soapy water. Take mild baby wipes when you are away from home.
If you think that the number of toilet visits is excessive, how many times do you visit the toilet to do a #1?? ~ 8 per day?? Well now you will do a #1 and a #2 at the same time. Not so bad really.....!!
Hope this helps. Do ask more questions if there is anything else on which I can elaborate.
Thank you, thank you, thank you!!! I just learned from you more in one response than I have had from my doctor in the two years we have been contemplating doing this operation. I will find out tomorrow when I visit the surgeon if I am still on for a "direct connect" and will not have to have a permanent colostomy. My father (who is still with us at the age of 87) has had a permanent colostomy since he was 57 so I am familiar with all that entails.
I am just reading your post now. I know it was back in May and you may have addressed this issue but I just had my entire colon removed 5 days ago and I believe things have progressed a little more than the above post indicated. I had an excellent surgical team and the procedure was performed lapro. I have 3 tiny incisions and 1 large in the belly button where the colon, 4.3 feet of it was removed. They did a complete resection to the rectum and I dont even have a temporary bag. I am not eating yet because everything is still asleep but it should be any day now. If you did chose to do this operation I hope you found the best surgeon possible. I debated this surgery for over a year also. I have had chronic constipation and colonic inertia for over 10 years. I wish you the best.
Would you please tell me where you had your surgery done and who the surgeon was? I am attempting to find someone GOOD who does a lot of these and who can do them Using the minimaly invasive proceedure you discribe. Thank you
Have you gotten any responses to your request for a good surgeon? My GI dr has just told me I need to have this done and I am still in a quandry about what's really best. I would like to talk to some people locally who have had this done and get a recommendation for the BEST surgeon. I live in Des Moines, IA.
To All: Everyone can contact the AMA and explain to them the type of surgery they need and ask for the names of the best doctor(s) in their area for this.
My sons had their colons removed at 12 & 16, my grandson at 10 (FAP). A genetic colon cancer like ours means you will develop cancer in your 30's. If someone has the attenuated form, cancer develops in the 40's to 50.
I used to post our family's experience with this surgery, but have learned that things have improved immensely and it's not fair to anyone as their experience is going to be better. I wish everyone luck with their surgeries, and prayers for a speedy recovery!
My son who had his colon removed at 12 is now 39 and he is a marthoner, ultrathoner, mountain biker, avid hiker, competes in jujitsu and at the moment is in training for a 100 mile run cross country to break the record. You can and will have a normal life!
Hello Bethie233, Im a 14 year old boy living in Georgia. I had a pull through sometime in may (Somewhere around in there) Its been about 7 months now. My surgeon's name was Dr. Parker. If im correct his first name was Paul. But im not sure. He did the surgery at egleston's children hostpital in Atlanta Ga.
I just had a total colectomy on Dec. 9,2010. The most important thing you
should do is find a surgeon that is knowledgeable and experienced in the procedure! I went to UCLA and had Dr.Sack, who also teaches this procedure, perform the operation. I feel so blessed to have found him and I am recovering much faster then anticipated.
I am a 57 year old female who have had chronic and massive diverticular bleeds for 9 years. After many test, my doctors has yet to determine the location of the bleeds, so taking out the damage section is not an option. However, since the interval of the bleeds have gotten closer, my surgeon has recommended removal of my entire colon and attaching my small intestines to my rectum. I have yet to have the final discussion with my surgeon about the procedure but am intersted in anything I can find out about this procedure and life afterwards. I am a teacher and would like to continue an active lifestyle following the surgery.
Hi, I read your post today, I would like to share my experience. As my husband has undergone this surgery in 2010 Jan (severe ulcerative Collitis) till today he is going to bathroom in the night for more than 10-15 times in the day time it is around 2-4 times, He will get rashes in the auns part frequently saying it is burning & itching all through the night he won't sleep, I need to know what diet he has to take & who can help in this regard, His BP is coming down, he is not energitic, We are located in Bangalore (India).
After the colon has been removed there is nowhere for the intestinal water to be "stored" and it leaves the body as "loose watery motions" which can cause anal soreness, The frequency of toilet visits should lessen over time. My "remedy" (i.e. high fibre diet etc) was quite simple - imagine that you spilt a liquid on the kitchen floor and then threw sand/sawdust on the soillage in order to make it easier to scoop up the spillage - as a "sludge" rather than as a liquid. Well follow the same principle for your intestines - i.e. high fibre diet, eat preparations containing uncooked oats and bran etc. Hopefully that will make your motions more "muddy/sludgy" rather than liquid.
After each visit to the toilet I suggest cleansing of the anus with soap and water as well as a mild antiseptic/soothing cream to help with the irritation from motions that now probably contain more corrosive components than before the surgery.
This is only forum I had found on the intestine surgery post-op recovery but I did found it useful so I thought I would post my progress as it seems related to other postings.
I am in 6th week in post-op recovery and had variety of side issues.
I had resection of the small bowel - little one, mere 10 CM , though in ER after a long wait and with some complication. Full invasive incision, bowel resected and ileucecum valve saved - so said the report -
I was stapled and put on morphine after the surgery. Note - I am a 52 year old male in perfect health with typical over-the-head California healthy diet (juicing fresh veggies etc, ... ) - woke up and felt relatively well, started drinking after 2 days, eating after 4 days when my friends Gastroenter. doc. had recommend to smell food to get bowels moving - it worked , or so it seemed -
Unfortunately I the incision become infected, followed by a pleiad of complications, from partial to complete unstapling in several ER visits and ending up in wound clinic for a week long cleaning and debridement of infected tissue, .... see picture if you dare ...
That made me really watch my state - my symptoms included sharp pains in different parts of my bowels - that's supposedly normal and it had slowly receded to minimum and seem to be related to diet, .
The first very stringy and irregular bowel movement was becoming solid and without the presence of odd flakes surrounded phlegm like substance. Taking stool was not painless either, but stabilized pretty much now to not-so-unusual state, ...still with occasional runny stool.
the other issues seemed to either flabergast all my doctors, or they did consider that normal - though they would never said either way, iether way it was the explanation that I was missing -
1. dizziness and hyperoxigenation that is continuing to happen until now but had receded in frequency and power, ... I am back on stairmaster and walk a lot, bike to the hospital daily. Had EKG , though negative, , first , I thought, it's post-anesthesia side-effect but that should not last ore then a few days, .... so I am waiting for that to end and not happy about it ...
2. sudden and extensive in different areas of both of my legs and pain in my right pelvic femoral canal that is still there so I cannot stand on my right leg - I suspect large amount of fluids or ascites to travel around ??? and slowly getting dissipated but doc's did not confirm that and coul not find any references but one of the post mentiones that as well. They ran 2 x ultrasound fro DVT / clotting - that was fortunately negative, but although swelling is gone now the pain and pressure in pelvis is still there, ... very annoying as it prevents me from doing standing yoga poses.
3. my nipples and chest had constant pain - they were super-sensitive to the touch - no one can explain why, but it's slowly receding now, ... after 6 weeks , ....
4. I have been sweating at night, without fever, I go through 3 shirts easy although now it receded . It is accompanied by total dryness in my moth that made my tongue stick to to the palate,as if saliva stop being produced, .. also not explained, ....
5. The fatigue has been intense, and alarming combined with dizziness and hyperoxugenation, ... my energy would drop by early afternoon and I went to sleep, .... it took at least 4 weeks to last thru the day, .... if we make love with my girfriend one night I can guarantee that I will have to sleep next day in the afternoo, ....
right now, I am in 6th week in po-op recovery and am a little impatient getting better - though I understand I lost 3 weeks with reopening and cleaning the incision.
Mammo and all others of course....
I too fall in the FAP category for colon cancer/issues. I had my surgery in jan 09. I am 29 now had it done when i was 27. Was diagnosed at around 22 due to pain in the abdomen which was gall bladder disease and pancreatitis. My sister (who has FAP) suggested to do an endo and colonoscopy to check me. Sure enough i already had over a hundred polops. However did not have the total collectomy yet. It wasnt until a few years later and a couple more attacks of pancreatitis that i went to have another series of scopes to check on thing. I was now almost in the thousands and pre-cancerous. Then still didnt do anything about it couple more years went by (the great things of this country not having health insurance), that i finally got insurance had scans and such done by a new professional for his own knowledge of me other than just my prior records he got from the past doctors. Finally had my surgery.
More in point of my post, i had it done laproscopically. A few small incisions scars are all i have. One around 3 inches down at the lower abdomen. Its amazing how far they came with this stuff. My rectum was saved as my polops seemed to be further up only one or so in my rectum. Doctor didnt want to remove it unless necessary, since im young. It affects you sexually having it removed he says. Due to sexual organ nerves and such running through the area. My sister had the same surgery as far as not needing a bag, but they took her rectum and she didnt have it lapro. She was cut down like the past ways and its ashame this wasnt done the way like mine back with hers and anyone else back some time ago so you didnt have to go through the severe slicing if you will.
For the females who have had a total colectomy (smal intestine attached to rectum) can you tell me if this has effected you as a female? Are you able to control your BM's during sexual intercourse? Are you able to take medications like birth control or any other medications or do they not get absorbed into the body like they should since you are having frequent BM's? Also are you able to have children without a ton of side effects or issues? Has it effected your periods? Things of that nature... thanks all!
Hi I am a 24year old female. I had a total colectomy in Aug. 2011 in Dallas Texas. I have to say that I was so scared before but really had no choice but to do it. I have no bag just resectioned it. So far this is the best thing that has happened to me. The surgery took about 6 to 7 hours due to a build up of scar tissue but it was not bad. I was out of the hospital 3 days after the surgery. So far everything’s been good. I can finally go to the bathroom. Thank God. I have trouble eating some foods but seem to be getting the hang of it. I have had no problems with holding my bm's. I go 1-3 times a day. Not at all at night. I do have gas (and yea some of it was nasty. I tell ya I could clear a room like never before) but have found out that not eating dairy and cutting down on sugar makes it go away.
I feel so much better my life feels like mine again. When i was first approached about the surgery i was 100% against it. But now I know it was the best thing I have ever done. I did have a few complications during and after but all in all im ok.
As for some of the questions for women here is what I’ve experienced. First of all as far as relations with my spouse things have not been this good in years. I have so much more feeling and it’s definitely GOOD. I was scared that my surgery would have made things weird or bad but not at all. I am able to control everything (as far as gas and bms) and have not had a problem with anything like that.
I have had no problems with any meds. I do have an IUD and have had no problems with that. Also because of that I have not had a period since March 2010.
I don’t know how it effects having children I have two and am not looking to have more. At least not right now.
Also I have had some problems with some depression. This by no means is a small surgery and can have some effects o ur emotions. But I’m doing better every day.
If you have any more specific questions please feel free to ask I will give you a honest answer to what I’ve experienced.
As of now I am going good. I’m still dealing with some fatigue and other things but to be honest it’s worth it and its livable.
Also I want to make something clear please don’t be afraid to ask your doctor any questions you have. That’s what they are there for.
I did have a build up of fluid behind the incision so I had to have it opened a few days after surgery, which left a nasty scar. It was not fun packing it for three weeks but I was able to do it and had no infection. I unfortunately had kidney problems not due to the surgery. It’s a genetic thing. But the stress of the surgery caused me to have some problems there. But I’m doing ok.
Oh one other thing is that even though it may hurt and you may be tired or whatever you need to stay active. Don’t over due it but go walk around the house 4 to 5 times and move up as you heal up. Staying active will help you’re healing and help keep things moving.
Like I said if you have any questions please feel free to ask me. If you live in my area and are looking for a good doctor who is smart and knows what they are doing please ask and I will give you my doctor’s info. He was amazing.
Thank you so much for your post. I see my colon surgeon on 11/23 to review my options. I had a sitz marker xray done after a million different other tests (my story here: http://www.medhelp.org/posts/Gastroenterology/Tortuous-Colon/show/1535243?personal_page_id=2196881) and the sitz marker xray came back significantly abnormal and the surgeon wants me to come in with my husband to discuss my options. I have been researching this online to try to come up with as many questions I can for him as well as just hear what others who have had this done have to say.
Any foods in particular you find to be the most bothersome? Right now I am already stricted on things.. I miss ice cream and cheese the most ha ha. But I manage. Just wondering if there are things I can't eat now that I might be able to eat if I do get this surgery and if there are things I can eat now that I might now be able to eat after wards.
I am very happy to hear that intercourse has been better for you. One of my many doctors did once tell me that with an empty colon or less full colon a woman actually will feel more and that it would be better. I was hoping this was the case if they remove it as well. And the fear of not being able to control your bowels during scares me.
I also work in an office and the bathroom is not super close to my desk so I pray that I recover as well as you do and I dont end up losing my job because of this change.
Did you have regular cut by knife surgery or laproscopic? I ask as I have heard they can do this both ways. And you mentioned issues with the fluid under your incision. What other types of complications did you have? Did you have an epideral for yours?
I am very happy to see there are still options for birth control as well. As I am on the birth control pills and have successfully not gotten pregnant on them and dont want that to change at this point.
Thank you again.. any feedback is greatly appreciated.
It doesn't seem like you've posted in a while, but I was hoping you can tell me how your son prevents dehydration. I am 34 and a runner. I will probably have this surgery in April, and that's a question I haven't had answered yet. Thanks.
While scrolling through previous postings I've just noticed your question addressed to me dated 16 November 2011. Apologies for overlooking this!
After my total colectomy surgery I was given pain relief via a spinal epidural which "numbed" my torso from the lower chest area to the waist. Hence I could not feel the build-up of motions (very runny as previously described) in the rectum. To counteract this I was put into "adult nappies". As I was connected to I.V. tubes etc, the nurses had to "clean up" several times a day since there was a regular flow of runny motions. After about five days when the epidural needle was withdrawn then the "full rectum" sensation could be felt and I was able to walk to the toilet in the normal way.
Thereafter, after leaving hospital, the frequence of #2 motions was as per my original posting.
I hope that these comments may still be of interest even after the long response time for which I again apologise.
I am getting Ready to have this surgery This week being June 28th.
I have been reading allot of post regarding this surgery and have seen several people say that they have had weight gain. This really really scares me. This may sound bad But that worries me more then anything. I try very hard to keep my weight in check. But the last few months it has been impossible. I am having this surgery do to severe constipation along with IBS.
I am not to worried about having a BM 8 times a day as this is better then not going for weeks at a time and having to take lots of drugs every day. not to mention the Pain I go thru almost every day.
I am not to sure what I should be eating after all is said and done
I think you might find that the effects of the surgery and being fed via IV afterwards might cause an immediate loss of weight. Thereafter normal disciplined eating/calorie counting etc etc should prevent a build up of your weight. On the assumption that you will find it much easier/normal to go to the toilet for a #2 the dilemma of whether your weight is building up due to the retention of inpacted faecal material will not be relevant any more. In other words "volume in = volume out".
Now, please have a look at my above posting dated 20 May 2008....
I found that both the frequency of #2 visits after my surgery and also the modification to my faecal material from "very liquid/loose" to "muddy/sludgy" could be achieved by a high fibre diet. For example:-
- pulverised fresh fruit to which organic bran has been added
- pulverised fresh vegetables to which organic bran has been added
- organic wholemeal bread
- for breakfast homemade muesli (soak organic oats in milk, add bran, grated fruit, lemon juice, nuts etc. It looks like wet cement but it tastes OK).
- no white bread, junk foood, colas etc
- and yes, you are allowed some Swiss chocolate if you wish!!
Hello- I don't know if you are still checking this posting site, but if so, I wonder how things are going for you now? Did you have your colon removed? I am scheduled to have mine removed in about a month, and I am really afraid/ considering backing out. Have you had trouble maintaining your weight (if you had the surgery done) or do you tend to put more on? I too have that concern, as I don't know what it will be like not taking all of the prescriptions and OTC meds for constipation that the Dr prescribed. If you had the surgery, are you happy with it? Are there challenges that you wish you were aware of prior to? I am worried about having urgency to go to the bathroom and making working in a setting where I have to travel quite a bit and not being nearby a restroom all of the time. Could you let me know if you have trouble with frequency and not having a lot of control?
You may want to consider looking at some of the posts by Morecambe who has had his colon removed. And if you direct a question to him, I believe you'll get good, sound advice and answers to your questions.
anyone who has had or will have complete colon removal
I am now 81 yrs old and had the surgery when I was 80. So I wanted to let other seniors who are going through similar problems to see the comments of someone in their age category. I had complete removal of the large colon due to constant diverticulitis After one surgery and the bleeding starting again. The Doc suggested one of the alternatives would be for total removal. Well I am now retired and live in a country where the medical facitilites are few and far between. So rather than having to continually return for surgery I decided it would be better for all to remove. The surgery was performed at SUNY upstate and the surgeon (fortunately for me) was superb. I still have the scar in my belly (no real problem as I dont wear a bikini) and had no bag. I do suffer (like most folks in a similar situation) from watery stools, other than that my life is normal (for anyone who is 81) Sometimes the visits to the bathroom (2-3 times per day) are more loose and sometimes a bit lumpy. I have always had a problem with fatty food, so avoid anything deep fried etc. Spicy foods dont seem to be a problem, I drink lots of water becuase I cant drink anything gassy, like sodas or anything too acidic. My sex life is good though of course not like a twenty year old hahah. I love gardening, but due to a more recent hip replacement still have to get around with a walker. Anyone who would like to chat about this I would be glad to respond
It's been nearly 5 years since you posted, but I'm hoping you're still around. First of all how are you now? Secondly who is your doctor in the Dallas region. I have an inert colon and I'm afraid Im going to have to do something. It's been progressively worse for about 15 years. I can't have a bm without a full enema and I have to do two a day. It's AWFUL. I'm also very active and that really concerns me. Thank you for being so candid. I look forward to hearing your answer.
My 1 year old had a Total colectomy due to Hirschsprungs disease. She had a bag for 10 months and is 8 weeks post pull through op/ ileorectal anastomosis... it has been hard as she cant tell me when it hurts ... her bottom is red raw, but improving and she goes 10 to 15 times a day.... at the beginning it was 30 to 50 times . Does anyone have pain when going to the toilet ? Thanks Julie
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