Total Colectomy - Removal of the Large Intestine

[ng1031]

I have been experiencing many symptoms and have had many tests and studies done on me.. (my story - http://www.medhelp.org/posts/Gastroenterology/Tortuous-Colon/show/1535243) and was diagnosed with a very  tortuous very long colon. My GI doctor pretty much told me there is nothing they can do for me and that I will just have to continue downing Miralax and every other thing to try to get me to go to the bathroom more then once every week or once every 2 weeks. I took it upon myself not to give up and was recommended to see a colon specialist/surgeon. When I met him for my first visit I actually cried. I am so fed up with dealing with these issues and am so scared of the long term effects this is having on my body.. I am only 30 and have been dealing with this for the last 5 years of my 20's. I am scared that having waste in my body for 2 weeks at a time is going to do long term damage.. not to mention how sick and bloated I feel all the time.

Well luckily the colon specialist listened to me and my next step is to get the colon transit study xrays to see if my colon is working or not. If it is not I might be eligible to getting my large intestine removed.

I am looking for feedback on this surgery from people who have had similar issues as mine. Is it worth it and if it is better then what I am going through now. The pros and cons etc. Also anyone that has had the surgery have they had issues with sexual intercourse after the surgery?? And what about medications and vitamins? Do you not absorb them if you are going to the bathroom so much? I am on birth control so I am concerned about that. Are you restricted on what you can eat. Right now I feel like I can't eat anything as I have been told no red meat, no dairy, no caffeine, no pop, amongst other things as they try to figure out what is wrong with me. There are 2 things I miss the most.. cheese and ice cream ha ha. Also I work in an office and the bathroom is not super close to my desk but on the same floor as my desk.. is this something I should be concerned about.. the last thing I want is accidents at work or anywhere for that matter. Will I not be able to go on long trips/vacations etc? How long did it take you to be recovered and be able to go back to work? Also how was the healing process?

[ng1031]

Thanks for that info. Are you on any medications like immodium?

[Morecambe]

Overall I could control my bowels at least for a short time.  In the immediate weeks after my surgery I stayed close to home and thereby close to a toilet so I never got "caught short".  I think I might have struggled after say ~30 mins.  My high fibre diet probably meant that my motions were more solid and the "pressure of the runs" was mitigared.

regards
Morecambe

[ng1031]

For the females that have had this surgery ...

- how has this effected your body as a woman?
- are you able to still have sex without having issues controlling your bowels?
- are you able to continue taking birth control medication? or any medications due to the fact you are have more frequent and watery like BM's?
- has it effected your periods??
- are you still able to have children or are there special precautions?

[ng1031]

After your surgery how much control did you have over your bowels? Were you able to control when you went or was it more like you went and you could not control it? And if so how long did this last?

[ng1031]

My Dr left me a message stating that my xray results came back significantly abnormal but it was as he expected. Which these were to tell him if my colon was working or not. So I assume this told him that it is not. He asked that I make a follow up appointment and to bring my husband with me so we can decide how I want to proceed and go over my options. I assume these will be surgery as that is what he had discussed with me prior to me getting these xrays. I called back and got the nurse so I set up the appointment. She is also going to have the Dr call me back when he is back in.

Any more input on this surgery would be greatly appreciated before I see him on 11/23. I want to have my questions ready for him.

[patient915]

I personally found that milk of magnesia works better than miralax and it takes some time to figure out the right dosage.