HealingWell
Search Close Search
☰

Life after subtotal colectomy

Support Forums
>
Ostomies
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 9/23/2013 6:31 PM (GMT 0)
In October 2006 I had to have a subtotal colectomy.  My entire large intestine/colon had turned black and was no longer functioning.  For 7 years I was told that having a bm once a month was "NORMAL" for some people.  Well, after being totally impacted numerous times, I went to a different doctor and they sent me directly to see a specialist.  I had to undergo numerous tests and then it was decided that I needed to have surgery.  When the surgery was over the surgeon came out to talk to my husband and they told him that in 2 more weeks I would have been DEAD. 

Increasingly over the last few years, my bm's have begun to space out again and it can be 2-3 days between.  I have also developed a lot of severe abdominal pain, bloating, gas & headaches.  I feel like there is something blocking everything off on my lower right side.  I have an inversion table and I get on that and it actaully hurts as I start to tip back and the pain is always in my lower abdomen...it is like my intestines are tangled up or something.  I just wish I could get someone to HELP me!  I have also gotten to the point where all I want to do is sleep.  I can fall asleep at the drop of a hat.  I talked to my family doctor about this and she ordered a sleep study.  The result of that test was that I have absolutely NO sleep apnea, however, I never get into REM sleep.  The technician told me that I woke up over 100+ times during the night.  So, now I have recently been diagnosed with Fibromyalgia.  Another thing is that I am NEVER hungry but I still eat 3 meals a day, as small as they may be and I have now begun to gain weight, like 35 pounds in the last 3-4 months.  I have been told that my body must be in "permanent" storage mode.

Can anyone help me? Has anyone experienced the same stuff?

Posted 9/24/2013 9:05 AM (GMT 0)
hi poopzy,

sorry to hear about your struggles. i had surgery for colonic inertia, as well, 4 yrs ago. they removed my colon, except for the rectum and attatched my small intestine to the rectum, but since i also had a pelvic floor dysfunction (outlet disorder, cuz of dysfunctioning pelvic muscles), i was still constipated. it kept consuming my life, so i opted for an ileostomy.

my case is not neccessarily yours, and it doesn't neccessarily mean that's what you'll need too. i think you should go back to your gastro/surgeon and run some tests, like:

1. transit time (sitz marker test) where you take a capsule that contains 24 radiopaque tiny rings. every couple days they do an xray and see how they progress in your system. if they get stuck at a spcific area in the intestine, it means there's a problem in that area. if they are scattered throughout the intestine, there's a functioning problem of the whole intestine.

2. ct scan with gastrographine to see if there are twisting of the intestine, kinks or other abnormalities.

3. defecography - testing whether your emptying process is normal as well as anatomy of the rectom at rest and at strain.

4. US of the pelvic - kind of same as defecography, but maybe can show things the defeco can't.

5. anal manometry - checking pressures, capacity of the rectum and muscles function.

hope you get some answers soon and an optimistic solution! :)
Posted 9/25/2013 1:50 AM (GMT 0)
I went to my GI today. He ordered some blood tests and I have to go in for a barium test within the next week. He is concerned that I may either have something twisted or pinched causing the pain on my lower right quadrant. He is also concerned that the pain behind my sternum could be from scar tissue as that is where one of my connections is and in an x-ray it looks suspicious as there seems to be some "fluffy" stool backed up in that area. As far as the fatigue, and looking at some recent blood work, it looked like I was anemic. I at least have some HOPE at this point.
✚ New Topic ✚ Reply