Managing pain and symptoms post total colectomy

 I am so glad to come upon this site. I had a total colectomy with IRA about 5 years ago. I am better since i have had it(hey, if you want to live you gotta poo) But I have been on a roller coaster since it. First I lost tons of weight and took months to recover, then I had terrible pain, then gained tons of weight, then lost weight, have constant nausea, and most of all, I still battle with constipation daily, I am also anemic. My diet is terrible. I cannot eat healthy, nutritious food.I tried eating a salad yesterday and had terrible gas last noc, my lower legs are constantly swollen. I need help!!  I am exhausted.I don't have the energy to go to the doctor anymore. I mean I don't have the energy to go through anymore tests!!!

  I am only 42 and wonder sometimes how I am going to live the rst of my life like this. My family is exhausted from all this to, Can anyone relate? Let  me know. I really feel I am alone in this  sometimes.

hopefulalways,

I am coming up on my 4th month post surgery. I have been on Tramadol 50 MG. twice a day. It takes away my pain and makes me feel normal, also I like it because it seems to help me sleep and most of all doesn't constipate me unlike a lot of drugs!

Unlike you I had a partial colectomy, so I won't dare compare our pain......just wanted to maybe give you

an option you haven't tried and some positive, caring feedback. I wish you all the best!

And remember we weren't put on this earth to suffer!!

I am still having some bleeding, is this normal and when does it usually stop?

Sending you healing energy!

inasimilarboat

I had a laparoscopic colectomy with ileorectal anastomosis surgery at the Mayo Clinic on January 18th for slow transit constipation. I was suppose to be in the hospital for 1 week and ended up there for 3 weeks. I formed an ileus.. the most pain I have ever felt in my entire life. I was on decompression tubes.. one in my nose/throat to my stomach and the other inserted in my rectum through the small intestine until my body could do things on it’s own. Before the tubes I was vomiting bile. I was on morphine drip and it still was not enough for the pain. It has been aweful. The surgeon told me that it happens to 10% of people and that the type I had was very rare. He also scared me when he said there was no guarantee it would not come back later on.

Now I am home and no more narcotics.. just Tylenol which to me does nothing but I understand that the narcotics are not good on the stomach and will slow down my process.

I am going more frequently (which is great from never going at all or feeling like your being ripped apart when you go) but because I am still on the liquid/soft food diet the bm’s are also liquid. From hearing other people’s stories I am surprised I do not got a million times a day. How much I go is pretty tolerable. I am behind as far as food.. I should be on week 4 introducing foods etc but instead I am only considered a week into things due to the ileus. It was like I had to start all over from the beginning.

Now its a matter of trying to deal with these pains and these cramps whenever my bowls decide to move things along. Do others experience these cramps? They are aweful. The doctors say its the small intestine trying to figure out what to do, moving things along etc. They also told me that if it’s making noises, gurggling and moving that is a good sign that they are still working. It might be a good sign but its painful and keeps me up at night. Before all I had was the noises and the movements but now I feel cramping. The other thing is they get worse when I lay down. So this makes going to sleep or taking a nap to get some energy very hard to do. I get them when I sit and stand up but they seem to be worse when I try to go to bed. and lay down. Because of that I am not getting much rest. I am using the heating pad, taking Tylenol PM at night to try to sleep and Tylenol during the day. None seems to really make it go away.

I also getting a random shooting pain whenever I pass anything that is not liquidy.. like if my bowl has any bit of substance to it I get this shooting pain in my lower right abdomen that shoots up. Anyone experience this? The surgeon says it's because my body is healing. It just makes me nervous as I really am scared of the ileus returning and have heard many horror stories about people having issues after this type of surgery. They told me as long as I am not vomiting again, that I am passing gas/bm and do not have a fever that I am ok.

Any input would be appreciated. The cramping that comes along with the gurggling/movement of the small intestine was so severe and last so long last night I am almost called the ambulance. I was up from 9pm - 5am fighting it and trying to sleep. It was not until 5am that it started to subside. It seems like when I pass gas or bowl (mine is all liquid tho) that is starts to feel better but it doesn't go away. It keeps happening over and over