colostomy surgery

[mifegr]

I have NO peristalic action in my colon.  It is completely and totally gone due to laxative abuse over many ,many years. I am told that I will have to have my entire colon removed. I am looking forward to this because I am suffering greatly. My doc said that I will most likely have my small intestine hooked up to my anus.  I know I'll have to wear a colostomy bag until the incision heals. However, what is the percentage of possibility that I'll have to wear a bag permenately?  Am I 90% likely to have to wear a bag permenately? 10% likely?  My doc is on vacation for a few weeks so I can't ask him and I am anxious to know.  Thank you!

[Kevin Pho, MD]

It is difficult to answer this question without knowing your file and the extent of the disease.  

The chance of whether the colostomy is permanent will depend on the extent of the surgery and disease.  Only your surgeon will know for sure.  

If there continues to be variation in the answer, I would always consider a second opinion before proceeding.

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Kevin, M.D.
kevinmd_

[Morecambe]

If you click on my nickname Morecambe in the "Search" section of Medhelp you will find some historic postings that I have submitted in relation to a total colectomy for torrential diverticular bleeding.  I would suggest asking your surgeon if an ileorectal anastomosis would suffice for your condition.  This means removing the colon and joining the ileum to the rectum rather than the anus.  In my case this was the operation that was performed and my surgeon said that there was perhaps a 2% chance that I would require a colostomy bag.  I was lucky and did not require this procedure and can go to the toliet normally (although more often).  Good luck

Morecambe

[mifegr]

After I posted my question last month, I read my answer from the doc and then did not return to this site until a few days ago. I just read your post left about a month ago on my other question and came to this site today just to look up what you told me to. I will do that when I'm done writing this. Thank you for trying to help me. I have a couple of questions that I'm really anxious to hear you answer. First, did you have your surgery done at Mayo Clinic? Second, I read that people who don't wear a bag have 5 to 7 bowel movements during the day and 1 or 2 at night. How many do you have? Is this a problem? And why do people have so many bowel movements after they're surgery? I am very hopeful that I will not have to wear a bag. I plan on going to Mayo for a last opinion. They have pioneered this sugery that allows people not to have to wear a bag. I'm hopeing to have that surgery there. It's called "Ileal Pouch-Anal Anastomosis. I read about it on their web site. Is this the same as the surgery you were talking about? You must be trilled that you do not have to wear a bag. I'm happy for you. Thanks so much for your help. Gina

[mifegr]

Do you have a problem with hemmoroids (hemorrhoids) since having the surgery?  And, if you eat a healthy, high fiber diet, do you have more bowel movements or less? Thanks!

[mifegr]

I just went to the Mayo web site. They said that the surgery I mentioned is done by having the ileum attached to the anus, rather than the rectum.  Thus, allowing the person only to have to wear a bag for the first 3 months while the incision heals.  After that, they can use the toliet for the rest of their lives.  You said the surgery you had which gave these results, consisted of hooking up the ileum to the rectum. Did you mean to say, your ileum was hooked up to the anus rather than the rectum?  Thanks!

[Morecambe]

Hi Gina - actually I live in England and the surgery was performed at my nearby hospital by a specialist bowel surgeon.  As mentioned, I suffered torrential rectal bleeding from the colonic diverticula and so the whole of the colon was removed - from the end point of the ileum to the start point of the rectum - not right through to the anus.  I know that there are surgical techniques that remove both the colon and the rectum thus connecting the ileum to the anus.  I think this is what is being offered to you.  But I believe that in such cases the necessity for a temporary (or maybe permanent) colostomy bag is increased - but your surgeon will be able to give you more precise advice.  I suppose that if I were in your situation, I would worry slightly that although the colostomy bag was anticipated to be required for three months, there would always be a chance that after that interval, the surgeon might say "actually this is a bit of an exception and, unexpectedly, we need to leave it there for life".

Yes - after the removal of my colon, the number of toilet visits increased and 5-7 during the day and 1-2 at night is about right.  Also your motions will be more "sludgy/muddy" in consistency rather that firmly formed.  This is because the colon previously absorbed water and, after the procedure, more liquid matter passes through the bowels and is expelled.  I did not find the increased toliet visits that much of a nuisance - but I am 61 and retired so the time pressures on the day are less than working full time and a slight loss of sleep does not represent an intolerable intrusion into my life!!

After the operation, in order to prevent too much soreness on the anus from more frequent toilet visits, I suggest washing the anus with soapy water.  When you are away from home, take a packet of mild baby wipes with you in the car to cleanse the anus after using toliet paper at a restaurant or petrol station etc etc.  Also, to make your motions less liquid, I definitely suggest increasing the fibre in your diet.  For instance home made muesli with plenty of added bran for breakfast in the morning will help and you can add fibre - or other roughage - during the day to snacks such as yoghurt.  Always choose food with lots of fibre/roughage such as fresh fruit, slightly cooked vegetables, oats, bran, wholemeal bread etc etc.  I find that the fibre "solidifies" my motions somewhat and causes their expulsion to be more controlled.  If the motions are almost 100% liquid, you are more likely to suffer "minor accidents" and also I find that such motions are more "corrosive" on the anus.  I have not suffered any incidence of haemorrhoids - but if you do, then I believe that this is easily treated and more of a minor nuisance.

Lastly, I would ask your surgeon (or show him/her this message) whether your condition would still be cured by the ileorectal anastomosis (i.e. joining the ileum to the starting point of the rectum) as a way of avoiding the colostomy bag for the reasons I mentioned above.

Good luck and I hope everything works out well for you.  Please don't hesitate to send another message if I can provide you with any further information.

Best regards
Morecambe

[Morecambe]

Hi Gina - just an afterthought to my response above.  I understand that when a total colectomy is performed as a result of FPA (familial adenomatous polyposis) - which I understand are kind of semi-cancerous polyps that can grow in the colon - there is a 17% chance of eventual rectal cancer developing some time later.  Hence it might be that if such polyps have been identified during a colonoscopy examination, your surgeon might decide to remove both the colon and the rectum at the same time in order to forestall the possible eventual development of rectal cancer.

Perhaps this question is worth posing to your surgeon in addition to the other points I mentioned.

Best regards
Morecambe

[Josusie]

I have FAP and had a sub-total colectomy in 1998 (aged 24). I have had a malignant polyp removed from the remaining colon 3 weeks ago tomorrow. I have been told by my consultant that I need to have the remaining colon removed and an ileostomy done in conjunction with an internal pouch being constructed. And then the ileostomy being removed. Has anyone has this procedure done? Any information would be greatly appreciated.

Thanks

S.

[mifegr]

Thanks for all the great info. I went to the site you mentioned and it answered quite a few questions for me. I will not know until all of my tests results are in exactly what type of surgery options I will have. That will be in about 3 weeks. I'll probably be posting more questions to you then. I am 45. I am told I will probably need my total colon removed because I have no peristalic action left in my colon. That is the muscle wall that moves the fecal matter forward. My colon is not diseased. I am hopieng that the tests will show that my rectom has not lost it's muscle strength also. Actually, I'm praying each day that it hasn't!  I want to be able to have the same surgery you had Morecambe. I don't think I could live with a bag. I have many other health problems besides my colon problem. Do you STILL have 5 to 7 bowel movements a day and 1 or 2 at night? I thought the bowel movements were suppose to get less as time went on..am I right? How long has it been since your surgery? By the way, I already eat a diet that it very high in fiber and contains all natural, unprocessed, orgainic foods. I also walk 2 miles each morning. Do you think these things will help me to have less bowel movements, or don't they matter?  Thanks again, Gina

[Morecambe]

Josusie - I am afraid that I don't know anyone with experience of the sub-total colectomy.  Maybe if you place a formal posting on Medhelp, you may receive an answer from the surgeon who participates in the Forum.  I was lucky and received feedback from him/her when I placed my original posting several years ago.  Good luck anyway.

Gina - yes, indeed it would be preferable if you can avoid the necessity for a colostomy bag and I really hope that your surgeon can achieve this for you.  My understanding is that the requirement for a bag (or otherwise) can only be decided when the operation is under way and the "geometry" of the various remaining intestinal organs that must be joined can be visually assessed.  Do ask the surgeon if the ileorectal anastomosis will suffice and if the chances of not requiring a colostomy bag are increased.

On the question of bowel movements, definitely the number declined in the months after the operation (which was performed in March 2004).  However I think it is inevitable that you will experience more bowel motions than the average person (i.e. 1-2 per day).  I recall that the number fell from perhaps 7-8 during the days after the operation to perhaps 5-7 (or on some days 4-6) in recent times as well as 1-2 during the night (probably more days with 1 nightly rather than 2). Maybe you will be lucky and end up at the lower end.  In my experience high fibre foods do not greatly reduce the number of toilet visits - but they "semi-solidify" your bowel contents and cause their expulsion to be less corrosive and more controlled.  Otherwise your motions are likely to be far more liquid - a bit like severe diarrhoea after eating something suspect.  Also, since you need to drink plenty of water after the operation due to there being less water storage capacity as a result of the removal of your colon, all the more reason to solidify the liquid material as much as possible.

I can't answer your question about 2 miles walking - but, as a general point, exercise always helps and the fitter you are for the operation the better.

Maybe it will be of interest if I summarise my own experiences of the operation:-

- it lasts about 4 hours
- whatever they say, you will feel a bit "beaten up" immediately afterwards
- pain is well controlled via an epidural drip for several days afterwards
- you will probably have a "heartless" physiotherapist insisting that you get up and walk about on the day after the operation to avoid blood clots etc!!!  This is standard practice
- you will receive numerous drugs for the after effects of the operation - especially strong antibiotics since any leakage or "spillage" of intestinal contents into the abdominal space during the operation gives rise to the risk of peritonitis.  Again do ask your surgeon about this.
- I experienced an ileus after the operation - which means that the intestines were slow to restart after being manipulated during the operation.  This lengthens the time that you are fed intravenously rather than being allowed to eat and drink gently.  You may need a nasal gastric tube to allow evacuation of the stomach's bile juice.
- while the epidural is still in place you may be numb around the waist and require "nappies"
- I stayed in hospital for 12 days (which is longer than the average of 5-7 days) due the the ileus.
- you need to rest for several weeks but you should make a full recovery.

Hope this helps - don't hesitate to ask for any further information.

Otherwise I would be interested to read another message after your operation - hoping of course that everything has worked out optimally for you.

All the best
Morecambe

[mifegr]

In about 2 and a half to 3 weeks I meet with my GI doctor to discuss all of my test results and at that time he will tell me what type of surgery I need.  So in about 2 and a half to 3 weeks I'll probably be asking more questions of you.  I pray a lot and I'm asking other people who believe in God and pray to pray that I will be able to have the type of surgery that will allow me NOT to have to live with a bag all my life.  And that I'll have NO complications during or after surgery but that everything will go well.  I know God is capable to this.  However, I have 1 last question....Here in the US, when they do the surgery you had, for the first 3 months after surgery, the patient must wear a bag so that the incision can heal.  The idea is you can't have fecal matter passing thru the incision.  Then, they go back in, take out the bag, reconnect, and you live life without the bag from then on.  Is this what you did?  It sounds to me like you never had a bag after surgery.  Thanks again.  Gina

[Morecambe]

Hi Gina - don't hesitate to ask me any questions that may arise in the immediate future.  I really hope that you obtain all the answers you seek from your surgeon.

I never had a bag of any kind.  The incision length for the operation was 10-11 inches vertically from just below the sternum past the edge of the navel to a point just above the pubic area.  From my understanding, after making the incision, the surgeon prepares the colon for removal, probably carries out many other preliminaries and then cuts out the portion of the colon that he/she wishes to remove. Thereafter the two "open ends" are sutured together.  You can probably find a diagramatic representation by typing "total colectomy" or "ileorectal anastomosis" into google or yahoo or msn etc.  You will find thousands of articles but some will describe the actual operation.  I believe that one of the most critical aspects is to ensure that the "join" (anastomosis) is perfectly closed since any leakage will inflame the intestinal area and peritonitis may result (although I think this is why antibiotics are prescribed preventatively).  Your surgeon will surely be well aware of this.  My intestines were purged prior to the operation by a special purgative so as to minimise the amount of faecal residue remaining prior to the incisions in the colon.  With your complaint there may need to be additional measures if your intestines are more resistant to purgatives.  But, once again, the only "insertions" in my incision were the surgeon's hands and instruments - no bag - no "nothing" to be removed later!!  If the join is perfectly closed there is no chance of any faecal matter escaping anywhere.  However, I believe that there are rare cases where slight leakage may unwittingly emerge and I guess that another operation is required to make the join 100% perfect and prevent any faecal/bacterial matter escaping into the abdomen.

The only other abdominal insertion (apart from the usual IV tubes) was a suprapubic catheter to allow urine to drain away from the bladder.

One positive outcome is the removal of the appendix which is attached to the colon.  So no need to worry about appendicitis ever again (assuming that your appendix is still inside you).

Once again, good luck and I'm happy to hear from you at any time.

Best regards
Morecambe

[mifegr]

I don't mean to get personal, but what did you do for a living....if you don't mind telling me.  You write so well.  Your so articulate.  I write like I talk...like a 5th grader :)  That's amazing.  The reason for the bag after surgery (according to the US doc's) is so no fecal matter will go thru the incision in it's way out your recturm, they are not worried about it leaking out into your body.  I went to see my GI doc today and he said that I definetly qualify for the surgery you had.  He said no permenate bag.  (By the way, my spelling sucks, in case you think I don't know :)  We are trying to get these tests done so that he can get me to a surgeon.  But I'm having a hard time clearing out for the tests.  Thanks again...Gina

[Morecambe]

Hi Gina - many thanks for the nice words!!  As you may have guessed, I went to University (to study chemistry) and then pursued a carrer as a chemical trader before retiring a few years ago.  In that business, it is obligatory to communicate clearly because, in large value contracts, ambiguity inevitably is detrimental to the business outcome.....

Anyway, I hope that you are in the most positive frame of mind for your operation.  Do let me know if any other questions arise in the meantime - and good luck

Best regards
Morecambe

[Morecambe]

Hi Gina - I don't know whether you are still logging in to this posting/thread -  but I have been thinking of you in the meantime since I guess that you have undergone your surgery recently??  Has everything gone according to plan - especially the absence of a pouch/colostomy bag etc etc?

Really hope that all is well and that your sufferings are now "history".

Best regards
Morecambe

[mifegr]

I have not had my surgery yet. I have 1 more test to complete and then it's on the surgeon.  I am having a lot of anxiety about this 5 to 8 bowel movements a day after the surgery.  Have you ever heard of anyone having this surgery and having only 2 to 3 bowel movements a day?  Also, my doctor said that the Ileal Pouch Anal Anastomosis surgery (which is what you had isn't it?) connects the small intestine with the rectum.  But you said your small intestine was connected with your anus.  Was your rectum removed?  
Hope all is well and I thank you again for your help and concern.  
Gina

[mifegr]

I finally see why I have been confused.  The Ileo recal connects the small intestine to the rectum, the Ileo anal connects the small intestine to the anua.

[Morecambe]

Hi Gina - as you correctly stated, my operation was the "ileorectal anastomosis" - i.e. the joining of the end of the ileum to the start point of the rectum with no pouch/bag etc etc.  Honestly I have not heard of anyone with 2-3 bowel movements per day after this operation but then I don't know many people who have undergone this particular surgery.  Your surgeon should be able to furnish you with more details based on his/her own experience with tens/hundreds of patients.  Maybe it is worth bearing in mind a few points in relation to your concern on the likely increase in the number of bowel movements after your operation:-

1)  I found the extra number of bowel movements a bit strange but quickly became accustomed to them.
2) you probably sit on the toilet 6-8 times a day for the purpose of urination - all that will change is that on each occasion you will now do a number one and a number two!!  Don't worry about it.  Please re-read my earlier response on avoiding anal soreness.
3) From one of your earlier postings, you mentioned the discomfort of an inactive colon caused by the long period of swallowing laxatives.  This must have resulted in you feeling sluggish and "blocked".  I am sure that the "glow" from a regular emptying of the bowels will, in itself, be a relief  and that it will dwarf any frustration of having to sit on the loo for longer.  I sometimes feel that I do my best thinking while sitting on the loo - so a bit more time there might boost your life in other unexpected ways!!

I'll keep retuning every few days to this posting and will watch out for any further comments.

Good luck as always

Best regards
Morecambe