Still unpredictable bowel habits 1 yr and 3 months after Sub-Total Colectomy; Help!

Hi Everyone, 

It has been a while since I have posted.  Often I get so depressed about my situation that I just want to give up!  It is good we can  offer support to each other.  Before I get into my questions, I wanted to tell everyone that I did see Lizzie when I went to visit my parents in Michigan.  My mom was with me; we went up to the hospital and visited with Lizzie on July 21st.  It was great to finally meet her after communicating thru this site and texting for over 1 year!  I know many of you who often feel ill say that you don't like it when people say, "But you look so good, so healthy!"  I have to say it about Lizzie though; she looked very pretty, very young (of course she is almost 1/2 my age) and very healthy.  She says she looks healthy because she is pumped "full of fluids" which of course hydrates the skin and puts some water weight on your body!  She really has an incredible spirit; she is so kind and helpful even when she is suffering!  I really wish her the best and hope that her upcoming Ostomy Surgery will be the start of a new, healthy life!

Now please if anyone can give me any advice I would greatly appreciate it!  Here is my situation:  I had my SubTotal Colectomy with small intestine hooked to 2" of remaining colon (April 2009).  After that my bowel habits changed from chronic constipation which caused much pain to diarrhea anywhere from 8-15 times/day.  The diarrhea causes bleeding and soreness and using wipes and ointments has become necessary all of the time for me now.   My doctors recommended using Lomotil; maybe 1 or 2 when the diarrhea was really frequent.  This didn't help at all!  For over a year now I have to use a combination of Lomotil, Vicodin, Percocet and most recently, Codeine Sulfate to control the diarrhea!  I have also tried Questran and Opium Tincture.  I always start out just taking 2 or 3 Lomotils; when that doesn't get things under control I have to take a Vicodin (for its constipating effect).  Often 2 hours after that I have to add a Codeine Sulfate.  Usually within 3 hours I can finally stop having bowel movements and can feel free to leave my house.  The problem is . . . . I usually feel totally "out of it" mentally because of all of the meds I take.  Even the Lomotil affects me this way (I have read that it actually contains a small amount of morphine).  I feel like now I am destroying my brain which is really depressing, especially because my body doesn't work too well either (bad intestines).  As some of you may remember I did have another surgery in April 2010.  This was done to remove a "blind loop" of small intestine that was holding waste and causing me to become toxic.  What was actually happening was that right where the small and large intestine had been stapled together (STC); a little end piece of the small intestine kept filling with waste and "ballooning out" until I had about a 6" round balloon of small intestine that didn't empty properly.  I had a laporoscopic surgery in April 2010 and they took care of that problem.  My doctor said it was no big deal; similar in complexity and recovery to having an appendectomy.  He was hoping it would help the diarrhea problem but it didn't.  Maybe it slowed things down a little but still I have to live on meds.

Now my doctor is saying all he can think to do is an Ostomy.  I am so afraid of having this done and not having a better quality of life afterwards.  I, like Lizzie, just can't take anymore!!!   Is there anyone who has had similar problems to mine that could respond.  Actually I would just like to hear from any of you who have had Ostomies.  What is the worst thing about having an Ostomy?  Do you ever really feel better?  What about your energy level?  Do you have adequate energy to do average daily activities or do you have to rest a lot; even months after the surgery?  Do you have to take many meds to "slow things down?"  I am so scared and my family thinks I should avoid more surgery at all costs!  I just hate having to live on strong narcotic meds as I do now!  Please respond.

Thanks,

Gilda

So, my doctor did a subtotal colectomy, removed 1 to 1 &1/2 feet of my colon, performed a rectopexy, which is where he pulled the rectum up, and hooked me up to a temporary loop ileostomy.  

My quality of life is so much better with the stoma. I can eat and not feel sick and bloated. I spend less than 30 minutes a day emptying my bag, which is way better than the 3 to 6 hours a day I was spending.

I was diagnosed with reflux many years ago and have been sitting up to sleep for atleast 6 years and have taken a bottle of rolaids every week for just as long....well, I can now sleep laying down and have only chewed 4 rolaids since having my surgery 6 weeks ago. I still take nexium though and I will ask my doctor what he thinks about me trying to discontinue it.

I also suffered horrible nausea and it too has been reduced by about 75%. Instead of taking zofran 3 times a day, I have been taking 6 pills a week. 

Of course having the bag takes some getting used to. I have had a yeast infection around the stoma, which I took some medicine for and it is all cleared up now, but I do have some skin erosion right below the stoma that I am still working on.  

I have to get up 1 to 2 times per night to empty, which is okay though because I am used to getting up to pee anyways, just takes me a little more time and of course emptying a poop bag half asleep can cause issues. Last night I poured half of the contents of the bag onto the floor.... Nothing funner than cleaning the bathroom floor in the middle of the night with bleach, but hey, not a big deal and I can laugh about it now.

I wish you the best of luck, Tracy 

Leslie