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?

[patient915]

To be honest, if you are on a medication like miralax or milk of magnesia, which doesn't cause tolerance/dependence, then that is actually better than being dependent on domperidone, but if you've found something that is working for you, then stick with it.

[s90]

I am not dependent on demeperidone!He gave me so that I can heal my fissures(I had an surgery on july 30) soon and to avoid hard stools cause every time it hits hardly it makes delay to recover.

[patient915]

Ok let me rephrase that, if you are on a medication like miralax or milk of magnesia, which doesn't cause tolerance/dependence, then that is actually better than needing domperidone to keep you from getting constipated/keeping your stools soft.  This is because miralax and milk of magnesia are much much safer than domperidone.

[ng1031]

Yah Miralax is nice but even when I am on it .. I still dont go for a week or 2 weeks. All it really does for me is make my stools softer and less pain full and my stools are more full and not like a couple pebbles

[patient915]

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

[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.