Total Colectomy Part 9

Hello everyone, I haven't wrote in a while, work has been crazy and I haven't been feeling the best. Here is my question: Monday is my appointment with the surgeon, 5 and a half hours forom where I live, in destin, florida. the appointment is in birmingam at university of alabama.I called his office today to find out what to expect. I mean, he was faxed all the reports, and I have obtained all my films to take along with me, all which show that I am full of stool, total colon. I would not want to go all the way there, say hello to surgeon and have to go back in 2 weeks. I would just prefer to stay if i need to. Sunday night I am staying at a hotel in birmingham, thanks to the airforce insurance... they reimburse travel, meals, gas, accomadations... how nice!! If the doc needs to do tests I would like to be prepared. What were your experiences with this?  I am waiting to hear back from his assistant, hopefully tomorrow so I can pack accordingly. Also, my endoscopy showed diffuse inflammation especially the duodenum. I wonder why? I had no symptoms until this week, I have a constant terrible burning pain above my belly button. I am using fleets enemas as needed, and it usually takes 2 for an adequate poop. I have tons of orangey, yellowish greenish mucous that comes out, rather than stool much of the time. It is foul and I hate it. The doc says it is mucous coming around the stool which is trapped inside... GROSS... But i notice when I have an enema, I have a huge amount of it as well. I hate being this way, I pray when I see doc on Monday he can just fix me! Also, I was told that the lining of my intestine is weak and inflamed, that the villae are flattened. I know this was a long post, any info will help me at this point!!Hope everyone is well,

Melissa

Post Edited (nursemelissa) : 1/25/2006 10:23:01 PM (GMT-7)

Hi all - well my surgery is scheduled for Tuesday. I am really nervous. Today was my last day at work and I am kind of a control freak and don't want anyone at my desk for the next six weeks or so, but oh well. I had a list of all the things at home I wanted to finish (we are in the process of remodeling) and I just have not had the energy. Don't know if I am just tired or so worried that it is taking all my energy - or both!

Has anyone had to have blood when they had their surgery? One of my friends did, but she was able to donate her own in advance and I did not, kinda worried about that as well.

Please just keep me in your prayers.

HEy, I AM A BIT DISAPOINTED NO ONE RESPONDED TO MY POST, BUT THERE HASN'T BEEN MUCH POSTED ANYWAY... I LEAVE FOR BIRMINGHAM IN THE MORNING, AND DID HEAR BACK FROM SURGEONS OFFICE. PRIOR TO SEEING HIM MONDAY MORNING I AM SCHEDULED FOR A DEFECOGRAPHY, WHICH SOUNDS KINDA WIERD... THEN I WILL SEE HIM AND WILL KNOW MORE AT THAT TIME. I PACKED ENOUGH CLOTHES FOR A FEW DAYS, JUST IN CASE SOMETHING COMES UP WHILE I AM THERE. IF NOT I WILL RETURN HOME AND GO BACK FOR SURGERY. WHAT PREOP TESTS WILL THEY DO? JUST WONDERING IF I WILL NEED ANY OTHER TESTS DONE, AS I DO LIVE 5 AND A HALF HOURS FROM THERE!! I AM EXHAUSTED FROM NOT EATING,PASSED OUT AT WORK TODAY AND HAD TO LEAVE EARLY, WHICH ISN'T EASY BEING A NURSE, PLUS I WAS IN CHARGE. I AM SOOO WORN OUT, I DEFINATLY NEED BLOODWORK DONE.

ALOT OF PEOPLE THINK I AM ANOREXIC, AND ALTHOUGH I HAD ISSUES IN THE PAST, I DO NOT FEEL THAT WAY. I KNOW I HAVE LOST MORE WEIGHT, NOW AM 106 PDS AT 5'10". I JUST HAVE NO APPETITE AND THINK I DEVELOPED AN AVERSION TO EATING "NORMALLY" AS I SUFFERED FOR SO LONG WITH NO BOWEL MOVEMENTS, BLOATING, NAUSEA,ETC WHEN I WAS EATING"NORMALLY". MY ABD.XRAYS LAST WEEK SHOW TOTAL COLONIC STOOL, STILL. GETTING ME CLEANED OUT WILL BE A CHORE... RADIOLIGIST ESTIMATED 6-7 POUNDS OF POOP IN THERE!! I AM WORRIED BASED ON MY PAST HX OF ANOREXIA NERVOSA/LAXATIVE ABUSE, THE SURGEON WILL LOOK AT ME AND MY CURRENT PHYSICAL STATE AND SEND ME TO A SHRINK!!! I REALLY NEED ADVICE HERE, BECAUSE I THINK IF MY POOP PROBLEM WERE FIXED I COULD EAT NORMALLY AGAIN.SORRY I RAMBLED ON,TAKE CARE, MY THOUGHTS ARE WITH ALL OF YOU..

MELISSA

Melissa- the preops that I had were CBC, chemistry panel, U/A, CXRay, and EKG.
about the anorexia and laxative abuse thing- well it does complicate things. It's probably the laxative abuse that caused the colonic inertia. You are way underweight for your height. Generally speaking you lose weight with this surgery. There is some value in normal electrolytes (chemistry panel) that would give the doctor an idea of your general health. You also have a real problem with body image. I speculate this because of the anorexia and your previous comments made here. They are going to cut you open, if it is laproscopic the scars will be less, but there will be scars. God forbid that what happened to me happens to you. Even I have had issues with body image with an ileostomy bag hanging off my lower abdomen, especially with intimacy. I am certainly not trying to imply that you are crazy, but the doctor will take all of your medical history into account. He might recommend a Psych consult, it would be him covering his as*. Remember, doctor's reputations are based on their surgical outcomes. And whether or not you are a good surgical candidate is important to his surgical outcomes.

I certainly hope that all goes well in Birmingham. Let us know how it went.

Chris- those sound more like typical colonic inertia results. The goal of normal funtion is to have 0 rings at five days. Did you ever try Zelnorm? It sounds like you are going some. Let us know how day 8 looks. Isn't it nice to have friends/family in the medical field. Normally you wouldn't know anything about your xrays until the doctors appt.

Hey to everone else. Hope ya'll are doing well.
Cathy

Chris-  I used to be the same way.  For a while, my period would cause my bowels to empty, then it was stress like a test, final exam or the medical boards.  Eventually, even extreme stress didn't work either.  Exlax was always my fallback position and even that quit working.  Zelnorm worked sometimes, but I never knew when it would work or not.  And when it did, I was in the bathroom all day.   Glycolax never did anything for, neither fiber, docusate, senna, etc.  But, it works on its own now.  5 hour transit time, yea baby!  No cramping, bloating, gas etc.  A little undigested food sometimes and some diarrhea occasionally.  Oh yeah I almost forgot, and that ileostomy bag hanging off the front of me.  Not for much longer though.  I am hoping for a little more water absorption after surgery.  Formed would be nice.

Talk to you later.

Cathy

@Cathy:  Yeah, I've been the exlax route.  My latest experiment was with dulcolax.  It works.  If I take about 8 a day for 3 days.  Tried MgS04 as well.  Tried Glyxolax.  Tried correctol.  Will find out Friday at 11:30 what I'm trying next.

Chris

PS.  Wife had a right colectomy a couple of months ago due to internal bleeding.  The doctors were unable to tell her what had caused her colon to bleed other than that some blood vessels had ruptured.  In conversation with her, I found that her bathroom habits were a lot like some of you describe, going once a month when she had her period (She said doctors had scoffed at her in the past when she brought it up, not believing that she was actually going only once a month).  Is it possible that the buildup in her colon caused the problems with the blood vessels?

 

Post Edited (kntkyboy71) : 1/30/2006 7:46:21 PM (GMT-7)

Oh my gosh, guys! I'm so sorry I've gone so long without posting! I guess I got so excited last Monday when I got back to work, time has just flown since! I'm doing fine. I did decide to start physical therapy because my back muscles are seriously deconditioned (and hurting!) due to being out of commission so long, and my abdominal muscles are pretty weak too. I'll be doing strengthening 3 x wk at an outpt rehab center here, along with some homework. Man, surgery after 35 sucks!!

Everything's going great. I'm still taking the Lomotil, which is a life saver (despite what Emma says!) 3 times/day which has slowed me to about 5 movements a day, with at least a little consistency. I'm taking potassium daily for a little while to help with that issue...

I saw that Sandy took my advice and talked with y'all, and I knew you'd all be great for her. It really was strange when I was at my last surgeon visit when he said "Hey...I think that lady out there is from your hometown and she is trying to decide on the same surgery. Would you be willing to talk with her about your experience?" We talked for quite a while there (3 hrs from our hometown...), and I gave her my phone number and she called me last week telling me she'd scheduled her surgery for yesterday. She was still so scared. Anyway, I called Baylor just a bit ago and talked to her husband. The surgery went fine, no complications so far, and she's happy in la-la land at the moment. He said he was so glad she found all of us to have the courage to do it. Everybody give yourselves a pat on the back!

Sasha-It's about time I heard from you! I was looking for you everyday there for a while! I'm glad to see you made it through ok. Are you still ok now?

Cathy-Hang in there girl! You're still my hero in all this. And just think what an interesting story this will be to tell to your old woman friends at the center 40 yrs from now! You'll do fine...

And it looks like a boy has made it past our defenses...who let that happen?? Welcome, Chris. You'll never find a more sympathetic (and empathetic!) group than this...

Hi Everyone!
It seems everyone is doing really well and that is so good to hear. I have been reading the posts, but have been hesitant to post b/c I have had some problems and I didn't want to scare people. Luckily, the doc figured everything out finally after I was in the ER for like the 4th time. This time was the worst with full small bowel obstruction b/c my anastomosis site had closed--docs said it must have been getting narrower and narrower over the past 6 months which was why I could barely eat. But for all my complaining and asking for a colonoscopy type test--they said that couldn't be the problem and just wouldn't do it. My doc got so frustrated that he told me it was all in my head and that I should go see a therapist about eating. Man, that guy was falling all over himself with apologies when I was in the ER 2 days later. Whatever, I just wished he had taken me seriously--I mean I do weigh 85 pounds, 20 less than 6 months ago (I don't know what would happen if I stopped drinking Ensure Plus) Which could look like an eating disorder to him I guess, but still I kinda think he's an ass :)

I just wanted to wish Cathy all the best on Feb 6th! You'll be in my thought. and prayers.
And hi to Emma and Amira and Zoe and Somer and everyone else that has found this fabulous supportive board.

I am doing so much better nowk knowing that things will get better over the next few months--I must be on my way to finally feeling as good as you guys always talk about feeling! I am excited to feel great, like you all do :)

Take Care!!
Sara

Hi all, Sorry I haven't been around in a few days but work's been keeping me busy.

@Cathy:  Regarding my wife...Her story is this (I will make it as short as I can but....you'll see).  about 5 years ago, before we were married, Allie was diagnosed with breast cancer.  She had to have a right side masectomy and chose the reconstruction surgery over an implant.  Once all of her treatments were over and she was declared free of cancer, she started on Tamoxifen.  In late 2004, Allie started having a lot of abdominal pain and started bleeding VERY badly through her vagina, especially during her menstrual cycle.  After some testing, it was found that she had several ovarian cycts, as well as a few large fibroids in her uterus.  It was decided that she would have a complete hysterectomy and this was done in June of 2005. 

Before the beginning of the school year my wife, who is a high school teacher, had to have her yearly physical.  While there, the doctor performed some routing blood work, which included a CBC.  When those results came back in, they showed that Allie was highly anemic and the doctor indicated that the RBC size and shape indicated that her anemia was being caused by blood loss.  It was at this time that I found out that she was passing large amounts of blood when she defecated.

The first thing they thought was cancer but a colonoscopy came back normal.   A test here, a test there, and finally they ran a blood scan (the one where they remove blood, separate the RBC's, then tag them with a radioactive isotope, then re-inject.)  This test gave a pretty clear picture of where the blood was coming from and her doctor told her that she could either have surgery or start taking blood transfusions.  This was on a Friday, the surgery was scheduled for the upcoming Monday.

Since then, her bowel habits have changed immensely.  At one point, she was going 1-2 times per month.   She now goes at least once, and sometimes several times, a day.  Her major concern she says is that there are times that her body does not give her any warnin abiout needing to get to a bathroom until it's already done the deed.

When the surgeon examined her colon, he stated that it was  deformed and only half the size that it should have been.  That could have been the cause of the constipation I supposse.   The bleeding stopped immediately so I guess it was all worth it to her.

Anyway, I feel like crap today-stoopid Upper Resp Infection.  I have an appt with my doctor today at 11:30 and should know what the plan is going to be.  I'll drop back in this afternnon and deliver the verdict.

/hugs

Chris

Lesa - glad you are doing well!  Thanks for checking in! If lomotil helps you, go for it...I just never needed it myself!

Cathy - Woo hoo, only afew more days to go.  Enjoy that Superbowl, if your anxiety is off the chart dont you have some benzos around that you can take.  Read a book, watch Tv and keep yourself very very busy and the time will fly.  A reconnection like you are having is a very routine surgery... everything will be fine! :)

Saramarie - Im glad you finally checked in... glad that you are on the way to recovery... and very mad that your doctor did not listen to you.  Sometimes we need to be strong with our doctors to make them listen, but glad you are on your road to recovery!

Chris - sorry to hear you are sick, good luck with your appointment!

As for me, I am borderline constipated yet again.  They think my small bowel also has slow transit. Stool is perfectly round and ball shaped and I only go about once every other day.  I guess I cant complain at least I dont have diarrhea!

School started on Tues, let the stress begin! :)

Hugs,

Emma

Wow Chris- that was quick.  Is the surgeon a colorectal surgeon?  Is it the same one as your wife?  If so, they're making alot of money off of you guys.  Ask for the family plan.  I'll be thinking about you too.  Are they going to do your prep in the hospital?  I wish I did.  Ugh!

Hey Emma, not good!  Can you increase your fluid intake?  I never want to hear that word again- constipation. 

I ate tacos for lunch and steak for dinner yesterday and my ostomy has been going crazy all day.  Thick like toothpaste.  I'm literally squeezing it out of the bag to empty it.  And the ostomy has been farting too.  I'm making really rude noises in patient rooms.  All I can do is laugh.  It does sound pretty funny.  I just wish it weren't me doing it.  I feel like the death row inmate having his last meal.  It's been nice eating anything.  I hope it doesn't take long to get back to that.

Gotta run finish working.  They've been killing me today, one patient at a time.

Love to all,

Cathy

Believe me, I'm counting!

I'm working alone today and we're only open for 3+ hours, so time will go by fast, then I have to pick my mom up at the airport. Dinner out tonight. My mom and I are going to the casino tomorrow morning with a friend, then it's the superbowl. So I plan to be busy and keep my mind busy.

Thanks to everyone for their support and help through these last few months. I KNOW that I would not have made it so easily without you guys. Ya'll are the best.

Cathy