Total Colectomy Part 9

Diseases & Conditions Ostomies
1
Started a new topic as part 8 is full.
 
@Emma:  Thanks for all the info, I have restarted the transit test today, so next week should have some more accurate results.
 
I guess my wife is just fighting a losing battle with the hot flashes.  She had breast cancer 4 years ago and is on tamoxifen; had to have a hysterectomy earlier this year which threw her into true menopause; and had the partial colectomy about 2 months ago.  She said that they had been getting better until the surgery and I passed on what you said.
 
Going to go fix the wifey some dinner as she is hard at work grading papers.  Thanks again for all your patience and information (and for putting up with a male interloper) :)
 
Chris
2
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 cool

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

3

So here we go again.  Time to start getting my life in order so that I can take a hiatus for a little while.  I got the taxes (personal) done, I still have the biz taxes to do, but they're harder.  I got out the calendar and scheduled all the kids appts for late Feb.  I got my auth from the insurance already, last time I still didn't have an answer the day before surgery.  Ordered everyone's medicines for next month.  I'll do heavy grocery shopping this weekend.  You guys know the routine. 

The painting is all done finally!  But, my husband had the living room, dining room, front foyer and the upstairs and downstairs hallways painted green.  Lime sherbet green.  Why did I let HIM pick the colors????  The other colors are nice.  I don't know what was going on in his mind when he picked out that green!  I now know why we are not interior designers- we have no talent in that field.

The surgeon suggested that I do a couple fleets because I still have stuff in my rectum from before the 2nd surgery.  So last night I did 2 back to back.  I couldn't hold it long at all, and what came out was bloody, thick whitish.  Very weird and painful.  I didn't like it at all.  Fowl smelling too.  Aren't ya'll glad I filled you in on that?  But, I do feel better today.

Where is everyone?  And why did they lock TC pt 8 so soon?  I hope everyone is doing well.

Cathy

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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.
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Nonna- I got two units of blood during my second surgery. My husband was kind enough to consent for me. For the 1st surgery, I wrote in "only as a last resort" where it talked about receiving blood/blood products. But my husband knew before I went into the second surgery that I needed blood and that I would end up with an ileostomy. I was so out of it that I remember nothing about those 3 weeks leading up to and shortly after the second surgery. If it's life and death on the line, I guess you can call that "a last resort." It is kinda weird though.

Try to relax about the surgery. I know it's hard. My surgery is next Monday. Take something to help you sleep, you need the rest. Eat your favorite food tomorrow, because it may be a while before you can eat it again. Go into this surgery with a positive attitude. It's the beginning of the road to recovery. You're going to feel so much better, just one small bump in the road to get past.

Oh yea- work will still be there when you get back. I am a major control freak also. If I need something done right, I do it myself. I therefore do everything! My husband was great, and is way more self confident now after working for the both of us for 3 months. Of course, I'll owe him back forever. But amazingly enough, the clinic didn't fall down while I was gone. My patients still love me and it took awhile but I can find everything in the office again. Just in time to go back in the hospital.

You're going to be fine and we're all praying for you.
Cathy
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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 yeah
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Hi all,
 
Had my 5 day xray on the Transit Test this morning.  15/24 rings left in the descending and sigmoid colon, with one WAAAAAY back at the beginning of the ascending colon.  My doctor wants me to go back for another xray on day 8 then I will be meeting with him to go over the options.
 
Sorry I don't have much to input on other's peoples situations but 1) I'm not in the medical field myself and 2) I'm fairly new to all of this and don't know much it myself.  I hope someone comes along this weekend that can give you all the answers that you need.
 
Chris
 
 
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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
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@Cathy: Yeah, I've actually had a pretty good run the past three weeks or so, averaging one BM a week or so. My typical cycle is to have a really good movement, then go 10 days or so before having another. It's almost like my colon empties itself out, waits to get full, then empties itself out again and so on. Then I will get on a cycle where I have to strain and strain just to get out a few hard rabbit pellets. Unfortunately, there's nothing "regular" about my excretory functions.

@Melissa: Good luck in Birmingham. I hope that they are able to get your problems resolved. The waiting to find out what's going to happen has been the worst part for me. I'm of the mindset: Ok, if I need this surgery, let's get it done and over with so I can get on with my life. If I don't need it, tell me what I do need so I can get on with my life. :)

@All: Hope everyone has a good day today!

Chris

PS: Looking over my posts, I can't believe that I've actually posted this stuff to a public forum. A few months ago, before I started down this road, I would never have believed that I would be discussing my poop so openly. :) Isn't life grand! :)
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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. sad   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
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Hello all,

Just checking to see if anyone remembers me, Kelly?  I took a different job at work and I have been busy since then.  I have occasionally read some posts, but didn't take the time to reply.  I have a little bit of time, so here I am.

I am still in the same situation as before.  Not able to pass stool correctly.  Since I am working everyday I can not get to a facility for bowel re-training and have not been sucessful finding anything on the internet.  My nerves are shot down there and I am unable to really feel good sensation to pass stool or gas.  So I bloat up a lot and use a suppository when I can.  I have gained all my weight back, which is a bummer.  My transit time is still very slow, I guess the small intestine was affected also.  Stools can be very hard to very runny. but more hard than the other.  Still I feel the surgery was worth it and would do it again.  I am in a 100% better situation than I was a year ago.  The surgeon who did the operation really doesn't have a great knowledge of these things and I have not looked in to a GI doc.  I wonder if they would remove any part of the small to speed up the transit?

Kelly

 

 

 

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@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)

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It will seem like forever for Friday to get here. My "forever" isn't until Monday.
As far as your wife is concerned, it may be possible. I'm curious about how her bowels are today, because the true colonic inertia patient will not have continued relief with only the right colectomy. Not enough of the colon is removed, and the constipation continues. One would have thought that they would have done a colonoscopy for diagnosis or worse case scenario cut open the removed portion of intestine for examination and diagnosis. Interesting case.
Cathy
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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?? tongue Welcome, Chris. You'll never find a more sympathetic (and empathetic!) group than this...

Lesa

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Thanks for the kind words Lesa, but right now I don't feel like anyone's hero. I feel like one of those little chihuahua dogs that tremble all the time. I'm having a slight case of anxiety. I can't imagine wanting to remember all this for 40 yrs. I would like to just get this all behind me. I know that I'm preaching to the choir. We've all been there. I just wasn't planning on having to be there again. I'm gathering my Charmin, Cottonelle, butt cream, etc. I'm writing on my ileostomy bag "no knicks, no leaks, no tears." I'm counting on this going as planned- nice and easy.

Sounds like for the most part, you're doing great. I'm so glad for you. You'll still continue to improve and I'm sure the therapy helps.

Hello to all you quiet ones out there. Let us know how you're doing.
Talk to ya'll soon.
Cathy
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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
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Sara- I'm so glad that someone figured you out. Some doctors are real a-holes. Hey! If you can't tell us your problems, who can you tell? I know that my husband just doesn't understand. No one can unless they've lived it too. That's why females make better gynecologists. And that's why this forum has been so successful.

Thanks for thoughts and prayers. I feel them, and I have confidence that all will go well.

We've missed you, Sara.

Cathy
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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
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I'm guessing that the bleeding was probably caused by the deformation but may have been exacerbated by the chronic constipation. The simple fact that the bleeding stopped after the surgery indicates the deformation. When she goes several times a day, is it formed or diarrhea? It sounds as though she has rapid movement through to the rectum, so fast that the body is not recognizing the nerve stimulus to the brain saying that "I'm full and ready to GO." If it's diarrhea that she can't control, lomotil is an option.

Hope you get the news that you want today.

For me, the waiting continues.

Talk to you later.
Cathy
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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