Sub-Total Colectomy

I am so scared. I can't take this horrible pain, the nausea, the huge distended belly full of stool, the awful discomfort of not being able to go 2 the bathroom. Tommorow I go n for my 1st xray for the sitzmarker test. I am scared that it will come back normal and I'll be doomed to live this way forever. "( Nothing has worked. I've tried mag. citrate, phosphsoda, geyolte, miralax, amitiza, mineral oil, milk of mag. colace, every over the counter lax. and enemas( they don't even work anymore) I am scheduled 2 c gi dr. but not till july 22, I don't think I can go on much longer. All i can do is cry and i can't work because of the crippling pain. I feel so sick that I can barely eat anything but I've never been so heavy in my life. You can feel the stool in my belly and everytime i eat it just gets bigger and it never goes down. I look 7 months pregnant. The pain hurts nonstop and I'm so uncomfortable. Please tell me there's hope that this nightmare only it's real will end. I'm to the point where I wish i was dead most days because the pain is sooooooooooooooooooooooooooooooooooooooo much. :( :( :( I'm so depressed and all I can fit into is sweat pants and my face and hands are very swollen with edema. Please tell me that with the surgery these dreadful things will go away or atleast be somewhat eased. I've dealt w this my whole life only now i can't deal with it anymore. Somebody has got to be able to do something....?????

Sugarbug

Yes I did recover quickly, but unfortunatly I'm in the same situation that I was before surgery. They may have to go back and take out the rest...waiting to see how/if biofeedback works.

Hopestar

If it has been three and half weeks and you haven't gone despite taking all of the things that you've mentioned, you should probably get in to see your doctor before you possibly perforate your bowels. Surgery for you will also be a question since you can't empty irregardless of what you take, and your colon needs to be empty before the surgery can be done.

Terri

What else can be taken out?  I got the paperwork from my doctor and he has written a total colectomy.  I'm wondering if that means my rectum too.  He described the surgery as taking out from the appendix to the rectum..He said I may need the biofeedback after this too.  I failed those balloon tests too but maybe this will help enough.

Hopestar

I know how miserable you feel...I'm feeling it now myself.  I went into the sitz marker test at my wit's end too...then I actually had a bowel movement the day before the first xray.  I figured I really blew it.  Well, that didn't seem to matter.  I failed that test ...off the chart.  I did the xray on the 4th, 7th and 10th day.  By the last xray I still had 64 out of 72 markers.  Hands down the doctors didn't hesitate to tell me I needed this surgery.  So after five and half years of testing and nothing...finally something to help.  Have faith....Good luck

Jennifer

Hi hopestar - wat a nice signin name

i am so sorry for you and the pain - i too suffer but i dont go that long in between bm. I am so surprised they are taking so long to sort you out!!!!!!!!!!! it is obvious you need help now! i hope it comes very soon in the way of an op to remove the colon. you will feel much better, judging by other people's experience.

i was going to suggest eating just soup and mashy stuff - but you are doing that. i just couldnt eat anything hardly when doing the marker test. You will lose the excess weight - your body is hanging onto toxins because you arent eliminating.

have you tried Senna tablets?? i know you have tried everything on the planet, but some people havent. take care now and i hope the op comes soon for you. x

karen.

Hi KayKay,

Sorry to hear about your struggles. I had a 2 step jpouch surgery about a year ago. I documented my 2 surgeries with photos and text, see the weblink below. If you'd like a better visual of what your surgery may be somewhat like, you may want to check it out.  It's a bit graphic so be prepared. 

 

Hopestar

You should ask for an xray for the tenth day...and get copies of your xrays...it's pretty interesting...my son was fascinating at all the little rings in my body....

Once you schedule your surgery, mine is Aug 11, you will have more peace of mind.  I can accept my protruded belly easier.  Hang in there...I was in the waiting game, out of my mind with pain, about three months, so it can change in one day.

Jennifer

Hi. I am new to this chat room . I stumbled upon this as I was looking for insight to my question. I had a subtotal colectomy in Dec 03 and I had many surgeries since then. However, 2007 was the 1st year I have made it through with zero surgeries!! I can't begin to tell you how my quality of life has improved since I had the surgery. Like you, I lived off of laxatives and enemas. Find a surgeon you are 100% comfortable with and go for it! Once you recover from the surgery... you will feel so much better it will be worth every bit of it.

I do have a question for yall. Has anyone ever tried to Flax Seed (milled) and had horrible cramping and gas pains from it?

This past weekend was terrible. I tried the milled flax seed in a smoothie on Thur and Fri... starting Thurs night, I became so sick!! The cramping and gas (that would NOT come out) continued on all weekend until yesterday. I almost went to the emergency room. The only thing I new to do was to increase my intake of my perscription laxative. I know... I had my colon removed and still have to drink a prescription laxative everyday!!!! So, I drank 6 glasses of it... and that did the trick. I am not sure if it was the flax seed... that is the only thing that I added to my diet.

Has anyone ever experienced this before? I was 22 yrs old when I had my subtotal colectomy performed... so this is all still new to me. Thanks in advance for your replies.