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?

[kris697]

I had that exact thing happen and my small intestine are not working. Now have to get a bag. How are things working out for you?

[pleasehelp236]

My 18 year old daughter had her colon removed due to colonic inertia. The surgeon removed it and then attached her small intestine to her rectum. It was a very painful recovery but it was definitely worth it in the long run. She would be in the hospital constantly to be cleaned out and this surgery gave her her life back. She was in the hospital for 12 days due to developing an ileus. For the first few days post op she could not control her bowels and would have to wear a pull up but after a week she was fine. In the hospital she had about 20 bms a day but once she started eating again it was about 6-8 times a day. That slowly started to decrease and now she is on miralax daily to help her go. Hope this helps some.

[Timmielee]

my above response was to you.  page automatically put s90 in and i failed to notice before i posted.  sorry about that

[Timmielee]

September 20, 2011 I had all of my large intestine removed and all but 9cm's of my colon.  They reattached my small intestine to what was left of my colon.  The surgery itself I don't remember.  The pain was there but bearable.  I am 45 years old and this is the 2nd intestinal surgery I have had.  My condition was diverticulitis, possible chrohns and loss of blood supply to the large intestine.  Since there was so much damage they could not actually say that I had chrohns.  I left the hospital within 5 days because I felt I could care for myself better at home.  I could not eat for quite a few weeks unless it was things like rice, baked potato but no butter.  I had black tarry stools for about a week and then as i started adding a little bit of food it became diarrhea.  Now, I still have loose stools and I do go about 4 to 5 times a day, but nothing that catches me off guard and I still go out and enjoy my life.  As for worrying whether or not I ever have issues again, I won't do that.  I will live the life I have now and deal with anything that my arise later in life.  I hope this little bit of information helps you

[ng1031]

Has anyone had there large intestine removed and had their small intestine attached to their rectum for colonic inertia and ended up with constipation after surgery? I heard that is a risk factor. That you can get the surgery but there might be a chance you will have constipation again one day. Also has anyone had their large intestine removed for colonic inertia and then their small intestine eventually give out on them? What happened then? .

[ng1031]

Well I have been officially diagnosed with colonic inertia. The xrays show that my stomach and small intestine are working but my large intestine is not.It is slow and sluggish which is causing the constipation and could have been the cause of why my colon is now so long and "loopy".  From the xrays they showed the rings passed through everything then stayed in the large intestine. They could still see atleast 19 rings in the large intestine out of 24 in the 3rd xray.

My options ..

He spoke with my GI dr  (ugh) and she suggested I see a constipation specialist at her facility who has access to drugs not commonly prescribed etc. and might be able to come up with a solution for me instead of surgery. He feels I should see him and pretty much see what he has to say and experiment so to say to see if anything helps me. The thing that upsets me about this option is that my GI dr never once recommended this "constipation specialist" to me over the last couple of years I have been going there and now that I have seeked another opinion outside of their facility they are trying to get me to go back there. I am done going through all these tests. Not to mention the last experimental drug they put me on made me so sick I ended up missing a week of work and even leaving work early cause it made me feel like I had the flu. Laxatives have the same effect on me as they make the colon try to work and just make me sick in the process. Me and my husband both personally do not agree with this option even though the surgeon feels I should give it a shot.

My other option is the total colectomy surgery where they would remove my large intestine and attach my small intestine to my rectum. This would require no bag. And I am a candidate for this surgery because my small intestine is still working. That is another reason he had me do these xrays. Not only to see if my large intestine was working but to also see that the small intestine was working.He did say that a majority of the people who have this surgery live happier lives. He did say it is a major surgery though and that with every major surgery there are complications etc.

He suggests that I see the constipation specialist and if I am not happy have the surgery. I personal am ready to stop having a million tests and pills shoved in my body and just get rid of the problem. My husband strongly agrees with me as I have been going through this for almost 6 years now.

I am gonna think about it all over the long weekend and then make a decision. I am leaning towards surgery.

[Bodyreform]

Did you get surgury

[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.

[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]

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.

[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]

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 was highly dependent on laxatives and don't ever want to start it back.I don't know about others but I am highly benifited by the medicine referred by my doctor.

[patient915]

I'm not saying you shouldn't have taken it, I'm just letting ng1031 know that it won't help his symptoms and it can be dangerous.  Everyone is at risk for long QT syndrome (even you), but it is rare.  Laxatives like miralax and milk of magnesia are good laxatives that will help your bowel movements but don't cause you more problems (like senna, enemas, etc. can cause).  The stomach emptying faster doesn't have much to do with a delay in bowel movement.

[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.