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?

[s90]

Well it was suggested by my doctor as I said before.My problem is I do have bowel movements everyday or one day gap but extremely hard stools cause once I used to have my bowel movement atleast 3-4 days gap.And after having anal fissure it had increased a lot and I started taking laxatives recommended by my doctor and it was ok but if I didn't used to take it I used to bleed.Later I had an surgery,it's almost recovered but my stools are still very hard without laxatives.So by emptying my stomach they are trying to change my hard tendency,now I do have bowel movements everyday but my intestines are unable to force itself just the time I actually need and may be they respond a few hour later.Well I was suggested for just a month,so I guess I don't have a risk of long QT syndrome.As the tablets is for emptying stomach faster I thought it may help u cause ur only symptom is having late bowel movement but as u have already tried this type of medicine before that means that ur doctor has tried his/her best.And if after ur xrays result come back he tells u to go for an surgery,go for it cause u don't have a option now.Best of luck.

[patient915]

Domperidone helps your stomach empty faster but it doesn't help with constipation.  It is not FDA approved in the US but it can be ordered from pharmacies in canada.  It is a semi-risky medicine (it can cause long QT syndrome which can lead to a fatal heart arrhythmia) which is why it isn't FDA approved in the US.  Always check with your doctor before starting any new medications.

[ng1031]

Yah I dont want to try any more medications until after my xrays come back etc. I was on Amitiza and it made me soooo sick.

[s90]

u may try domperiodine 10 mg tablets.This medication increases movement through the digestive system. It is used to treat symptoms of stomach disorders. It may also be used to prevent nausea and vomiting caused by certain medications.

I don't know if u should use it without doctor's recommendation.It was suggested by my doctor as I have weak intestines.he told me to take it three times a day atleast 5-10 min before meals and if u have acidity lyk me u can take esomeprazole magnesium usp.And take isobgul 2-3 times a day and take triphala plus in morning.Eat lots of papaya(the orange one)

[ng1031]

It takes me a whole week to have a BM sometimes 2 whole weeks

[ng1031]

If you go to the link in my original post it will show you all the tests I have had. I did have a barium enema xray (ugh) and I am getting colon transit study xrays the week of Oct 18th to see if my colon is actually functioning or if it's just the twisting and  extra long length that is causing my issues.