Total Colectomy Part 34

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answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 4/24/2010 7:06 PM (GMT -6)   
It looks like our last thread has been closed. Where is everybody???

I have been feeling run down and just unwell. I went to the GP yesterday and he did blood tests. He is going to check all my levels, thyroid, iron, vitamin d, etc.

I don't see my doctor until May 6th and can hardly wait. My defogram looks abnormal and I am hoping he can fix my rectum. I tried to post the pictures on here, but it wouldn't let me. mad

Hischildvalda
Regular Member


Date Joined Feb 2010
Total Posts : 176
   Posted 4/24/2010 9:00 PM (GMT -6)   
Thanks for starting a new thread for us. I'm here and have been reading and praying for all but not replying. Wish you could have posted pictures. That is something that I haven't tried to do. Please let us know the results of the tests you had done yesterday. Praying for you.

(((hugs)))

valda
1999 Fibromyalgia and all the fun stuff that goes with it came to live with me.
 


Gilda
Regular Member


Date Joined May 2009
Total Posts : 194
   Posted 4/25/2010 12:31 AM (GMT -6)   
I am glad that you started this new thread. I couldn't figure out where everyone went. I am having yet another surgery on Tuesday. You probably read about it on another thread I posted. I am scared but I have to do it. Hey, has anyone heard anything from Lizzie or Rosemary? Anyway, you are both in my prayers!

Gilda

tinkerbell2
Regular Member


Date Joined Jun 2009
Total Posts : 418
   Posted 4/25/2010 7:29 AM (GMT -6)   
Gilda, what surgery are you having Tuesday?

Tracy, can you email the pictures? I have all 3 video's of my defecograms and know pretty much how they read them. I'd like to see yours!
~Jenise~

Chronic Constipation - last 20+ yrs.
Stage lll Pelvic Floor Prolapse ( rectocele, rectal, vaginal, bladder) Rectopexy, Sacral Colpopexy, TVT Sling - 8+ hr surgery - March 2009
Constipation increased, could not move bowels without excessive straining or laxatives - March 2009
TVT Sling Released - April 2009
Redundant, Twisted, Prolapsed colon found - causing mechanical obstruction Oct. 2009
Rectosigmoid Colectomy w/low anterior Anastomosis & Revised Rectopexy - Dec. 2009
Perineorrhaphy & Posterior Colporrhaphy (rectocele repair) - Dec. 2009
Today - using MiraLax daily,but still struggle to have a BM :(


tinkerbell2
Regular Member


Date Joined Jun 2009
Total Posts : 418
   Posted 4/25/2010 7:35 AM (GMT -6)   
Actually Tracy, upload them on a web photo place (like google'e or flickr.com) I remember - that's how I had to do it and then I posted the links to the photo's

*Surgery sch. 07/26/2010*
~Jenise~

Chronic Constipation - last 20+ yrs.
Stage lll Pelvic Floor Prolapse ( rectocele, rectal, vaginal, bladder) Rectopexy, Sacral Colpopexy, TVT Sling - 8+ hr surgery - March 2009
Constipation increased, could not move bowels without excessive straining or laxatives - March 2009
TVT Sling Released - April 2009
Redundant, Twisted, Prolapsed colon found - causing mechanical obstruction Oct. 2009
Rectosigmoid Colectomy w/low anterior Anastomosis & Revised Rectopexy - Dec. 2009
Perineorrhaphy & Posterior Colporrhaphy (rectocele repair) - Dec. 2009
Today - using MiraLax daily,but still struggle to have a BM :(


esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 4/25/2010 2:50 PM (GMT -6)   
Hi all,

I'm on Queen Mary 2 doing impromptu transatlantic crossing basically to dance and relax. I saw Tracy's pics on an email and it looked like she had internal rectal descent. like when she pushed the bottom part of her rectum curved in her low pelvis. Tracy, try to upload them and post here; I want to see what Jenise and some of the others think.

good luck with the surgery Gilda. What is it?

Thanks for starting this new thread; I was wondering where everyone went. Hope Lizzie is hanging in OK until her May 7th appt. Good luck everyone. I'm doing at least 2 dance classes per day and 2 at night. May take tonight off; my feet are sore. Cha, cha, cha, Rosemary

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 4/25/2010 4:04 PM (GMT -6)   
Jenise, what is your email address and I will send them to you.

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 4/25/2010 4:07 PM (GMT -6)   
And anybody else who wants to see them, just post your email address and I will send them.

I need somebody to DIAGNOSE me! LOL

So, come on girls, help me out....

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 4/25/2010 4:08 PM (GMT -6)   
Jenise, what surgery are you getting??????????

tinkerbell2
Regular Member


Date Joined Jun 2009
Total Posts : 418
   Posted 4/26/2010 9:02 AM (GMT -6)   
Tracy, I' am getting another colopexy.. so far as everything has fallen again! The rectum, bladder and vaginal. He really isn't 100% what he'll find.. and I may need another rectopexy!! I just hope my colon surgery too enough of my colon out - because if not, I could be back just like I was before! I feel like I'm running in a circle!

I really want to see your photo's.. so I can compare! Did you get a video too? All I have are video's. My email address in tinker@fmgirl.com

Rosemary, I can't believe you are on another cruise! I'm so jealous! My 1 one and only cruise this year is in October - just a 7 day get-a-way!
*** New Schdule Schedule July 26, 2010 **

~Jenise~


Chronic Constipation - last 20+ yrs.
Stage lll Pelvic Floor Prolapse ( rectocele, rectal, vaginal, bladder) Rectopexy, Sacral Colpopexy, TVT Sling - 8+ hr surgery - March 2009
Constipation increased, could not move bowels without excessive straining or laxatives - March 2009
TVT Sling Released - April 2009
Redundant, Twisted, Prolapsed colon found - causing mechanical obstruction Oct. 2009
Rectosigmoid Colectomy w/low anterior Anastomosis & Revised Rectopexy - Dec. 2009
Perineorrhaphy & Posterior Colporrhaphy (rectocele repair) - Dec. 2009
Today - using MiraLax daily,but still struggle to have a BM :(

** update: Surgery to fix rectocele and other pelvic issues 07/26/2010)**


answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 4/26/2010 9:10 AM (GMT -6)   
Ok Jenise, I emailed the pictures....

And anyone else who wants to check them out, I figured out how to put them online.
Go to flickr.com then click on people..... then put in my email address paralyzedcolon@yahoo.com
And the pictures will come up.

tinkerbell2
Regular Member


Date Joined Jun 2009
Total Posts : 418
   Posted 4/26/2010 6:25 PM (GMT -6)   
Hi Tracy, I received 3 pictures via email... picture #3, were you straining then? To me.. it definitely looks like your rectum is descending way too much, and it looks like it could be causing a mechanical blockage - like I had. It may be redundant - which would not be unusual in people like us with chronic constipation!! You pictures look different than mine... I'll try and post some of mine tomorrow so you can compare! When do you go back to the doctor? I can't wait to hear what he says!! Was this your first defecogram?
*** New Schdule Schedule July 26, 2010 **

~Jenise~


Chronic Constipation - last 20+ yrs.
Stage lll Pelvic Floor Prolapse ( rectocele, rectal, vaginal, bladder) Rectopexy, Sacral Colpopexy, TVT Sling - 8+ hr surgery - March 2009
Constipation increased, could not move bowels without excessive straining or laxatives - March 2009
TVT Sling Released - April 2009
Redundant, Twisted, Prolapsed colon found - causing mechanical obstruction Oct. 2009
Rectosigmoid Colectomy w/low anterior Anastomosis & Revised Rectopexy - Dec. 2009
Perineorrhaphy & Posterior Colporrhaphy (rectocele repair) - Dec. 2009
Today - using MiraLax daily,but still struggle to have a BM :(

** update: Surgery to fix rectocele and other pelvic issues 07/26/2010)**


answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 4/26/2010 6:59 PM (GMT -6)   
The crooked one is when I was pushing...no hope of pooping through that mess... I did have a defogram 2 years ago and it looks nothing like that....my mom thinks it is scar adhesions???? I just hope the doctor can fix me. I see him next Thursday and it can't get here soon enough. I googled defograms, normal, abnormal, etc. and I couldn't find one that looked like mine.

It seems really big???/ Maybe I have megarectum too. And I have alot of room for it to be able to curve like that, don't you think? It looks like a huge empty space to me. I am not normal!

Hey, I just WANT TO BE NORMAL! Go to the bathroom, poop in less than a minute, and go on with my day. I am being a little rebellious and have refused to take any miralax...and I am not going to take any until Wednesday, or I may wait until the weekend. I am tired of living like this.

I can't wait to see your xrays...I want to compare. I am also going to try and get the pictures from 2 years ago since the jerk colorectal doctor threw my defogram tape away that I accidentally left at his office. GGRRRRRR I am so pissed about that.

Janiepain
Veteran Member


Date Joined Jan 2007
Total Posts : 662
   Posted 4/26/2010 7:48 PM (GMT -6)   
Hi Tracy,

I looked at your pictures and then looked in my book "Why Can't I Go?" by Christopher Lahr. I couldn't find any pics that looked exactly like yours. I'm very anxious to see what your doctor says!

After 13 months I still only go if I take miralax twice a day. Most days I'm able to go several times, but the other day I had an endoscopy so I couldn't take the miralax in the morning. I ate lunch when I got home and within an hour or so I started having rectal pressure. I took miralax early, but in the meantime used an enema. Not alot came out, but enough to relieve the pressure. I never asked to see my defecogram pictures, all I was told was that I had a small rectocele and that my test after surgery was worse than the one I had before. I'm going to call tomorrow and ask for copies of the pictures of the tests.

I have an appt. with my surgeon the first week of June. I haven't seen him since October; I've canceled a couple appointments because I keep hoping things will change. I can live this way, and in many ways it's better than before surgery, but still it can be challenging. I can't be out shopping and stop to eat; I have to plan when to eat and when to take the miralax. It's definitely not what I had hoped for, but when I think of those hours every week struggling to get something out, I have to admit it's better now.

Jenise,
I'll be thinking about you! I sure hope surgery helps. I know you're discouraged.

Janie

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 4/26/2010 8:13 PM (GMT -6)   

Jenise,

Good luck with that repeat surgery.  Hope it's laporoscopic to minimize adhesions.

We HAVE to write a book.  Prior hysterectomies and child birth wrecks such havoc with bodies that the medical world still is not on top of.  Plus I am amazed at how many defecograms certain people on here have had and they seem to get such different results from each.  There HAS to be some way to standardize all this for accurate diagnosis.

Tracy, good luck at the doc's.

We are now off the coast of Newfoundland.  Am winding down from the late night dance.  Met a friend from my other cruise to dance with and it's been a blast.  We land Thurs. in NY.  Pray I stay well.  I WISH I had just jumped on this ship back on '06.  But things went as they did and I'm lucky to be here now.  It's like a floating community.  It's amazing.

Gilda,  Best of luck with your surgery too.

Lizzie, I hope you are hanging in and doing OK.  My prayers with you all.

Rosemary


XtremeMisery
Veteran Member


Date Joined Sep 2007
Total Posts : 687
   Posted 4/27/2010 3:23 PM (GMT -6)   
Quick Update:
Sorry I have not posted. I was in the ER this week with low potassium and pain and alight infection and just have not been feeling well. I did way to much. I have been helping my mom (she had foot surgery wed and cannot get around well and does not get a better cast until the day before we leave for my surgery) so I have been doing her cleaning, baths for the kids (she has my sisters 2-the one i have been talking about) and then my younger sister works 330-12am and leaves her 3yo overnight when her boyfriend is out of town with work and this has been a lot lately and she will not try and find a night sitter and it has caused my mom to tears so I have been doin laundry, cleaning, getting kids dinner, taking older one to practice, picking him up, picking up dog poop, baths, bedtime stories, etc and in the mess of all of this I threw that shower sat for 25 people at my moms house, cleaned up and have just been going, going going since last wed and I crashed today and feel like I can barely move agian so I took 40 Meq of potassium and ran some errands, but going to try and just lay here.
 
Tracy- I got you pics and something is defnatel not right and like me I had a mechanical obstruction that led me into very ill siuations so I hope theyhelp you and figure you. They may not want to call it anismus, but something is wrong and it does not look normal!!!!!!! Also, not getting the barium out at all in itself is enough proof that you have an outlet issue and need surgery. You need your rectum removed and colon and need to decide if an ileo is what you are willing to do as I do not think  TC is going to work for you.....or a kpouch, but as you know your surgeon was against it. Mine is not, but if mine fails again a perm ileo is not scary to me....you need your life back.
 
Lori- I think of you everyday and pray for you....I am so worried for you it makes me ill to the heart. Never ever stop believing in God strength to take care of you and know you are always always in my heart and prayers.
 
I have not had time to catch up....to exausted, but I love you all...Janie, rosemary, Gilda (so good to hear your voice and I am praying praying praying for you and this surgery), Jenise, Hodaya I am worried about. I got am email from her and her second defogram she was able to get all but I believe almost 30 % of barium out, but she is very down, isolated and not living. She has to get up 3 hrs before work to just get some of the stool out.....
 
I have been very down myself and in a lot of pain as my tube is beginning to leak more and more and my skin has allopen sores from the stool on my skin and I do not sleep as I am always taking care of my skin. Thank God I saved some of my stoma powder and am trying to heal it in this way, but have not had much luck. I feel like I cannot eat anuthing anf this is not good before surgery, but I am....just not enough and the protein I am trying to eat makes my output smell horrible :( I can hardly stand it!!!! Anyways....
love you all and thise names I did not mention does not mean you are not in my heart, I feel very down and depressed and scared and have not been talking to many people, but I will def be updating you more frequently as you are all I have,
Lizzie
Chronic Lifetime Constipation, Dx IBS-C for 7 yrs
Diagnosed Colonic Inertia-Oct 2007
Total Colectomy with ileorectal anastamosis- Jan 28, 2008
Ileus with suspected leak- Feb 1, 2008, ended with four abdomal abscessses and 2 drains
Diagnosed with small bowel Fistula- March 6 2008
Drains removed- End of March 2008
Continued Constipation- biofeedback for 3 mo Aug 2008, Dx Rectal Inertia (Anismus)
Admitted with Small Bowel Obstruction April 4, 2009 and emergency ileostomy 4/13
Re-admitted with abdominal abscess. Released 4/24
Cleveland Clinic twice for 3/4th referral. Anismus undetected (no medical explanation)
Retracted stoma-infection/skin breakdown.
Ileostomy Reversal- Oct 8, 2009. Ileus/Dehydration 10/13. New rectal dysynergia-biofeedback-11-19
Bowel Obstruction 1-7-10 through 1-19....PICC, Tpn/Lipids...transferred to Cleveland Clinic 1-19 for BCIR (k-pouch). K-pouch surgery Jan 25 by Dr. Dietz in CC. Muiple complications (blood clots, hemmorrhage, three abscesses) After near six weeks in hospital home recovering. Now developing some type of RA and aving issues with pouch. Going to get scoped this Thursday 2/8 in Cleveland. Say your prayers. Worst fears came true....another major surgery.
-Slipped valve and replacement tube in until surgrry May 7, 2010
"The Greatest Healing Therapy is Friendship and Love"


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 4/27/2010 4:10 PM (GMT -6)   
Lizzie~take it easy...I've been worried about you!

Have you tried Calmoseptine Lotion on your skin? Your pharmacy should have it behind the counter...I think it's better than powder:)
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 4/27/2010 4:55 PM (GMT -6)   
Lizzie, you staying busy may be a good thing....Staying busy keeps the depression away for me. Just be careful! When is your surgery?

I am actually hoping my doctor can do a resection of the rectum and make it work. It is not anatomically correct and I would think he can fix that...

I also looked in the book WHY CAN'T I GO? And couldn't find a picture like mine either. Surely, somebody has had a defogram before that looked like mine?? Waiting for my dr appt has been hell and seems like it will never get here. I am just trying to stay busy and luckily, I have some extra trips this week that will keep me very busy, then when I get home and settled, I collapse from exhaustion.

Just hoping my appt with my doc isn't a let down like so many other appts has been. I think I may burst into tears if he says, "sorry, I can't help you".



Jenise, so, you don't think the partial colectomy helped, at all? Because I am hoping my doctor can fix my rectum, maybe remove some of the colon, but leaving most of it intact. I don't want to end up pooping my pants either! I think I would rather live like this than incontinent.

I know, I am so dumb!

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 4/27/2010 5:03 PM (GMT -6)   
Janie, did you see your defogram video's? If so, did your rectum look like mine at all?

I also have a good idea for you. I bought miralax to go packets. I have them in my car and on my bus. So, I can take it while I am out and not have to wait until I get home.

Janiepain
Veteran Member


Date Joined Jan 2007
Total Posts : 662
   Posted 4/28/2010 5:58 AM (GMT -6)   

Tracy,

Thanks for the suggestion.  I sometimes carry some miralax in a little plastic bag; I'll look for the packets.  Much easier!!

I never saw my films, but I'm calling the hospital today to ask for them.  Never thought to ask, just listened to what my Dr. said....which was that I had a small rectocele, after writing in a report that I have an extremely large rectocele...am anxious now to see what the films look like!

Hugs Lizzie.....hang in there sweetie. 

Lori-you're in my prayers every day.  Please let us know how you're doing.

Janie


tinkerbell2
Regular Member


Date Joined Jun 2009
Total Posts : 418
   Posted 4/28/2010 8:20 AM (GMT -6)   
Tracy, I'm in a hurry and will get back to you this afternoon with my photo's.. but I remember they don't look exactly like yours.. but my rectum WAS prolapsed. Has the surgery helped - YES, removing part of the colon and the upper part of the rectum helped - plus they did a rectopexy - which tacked the rectum back up and did make the stool at least get into the rectum.. but apparently things prolapsed at around 6 -7 weeks (that's when I recall having issues) Now since then.. the stool still makes it into the rectum for the most part (Miralax is a must everyday and I use fleet glycerin 99% of the times - it always like "wow, I went all by myself'! when I go without help! LOL) Now my issue is getting out of the rectum. I have a huge bulge (again) in my perineum area and on the whole right side of my anus. I have to push the bulge up and out everything pops!

I DO wish the colon doctor took ALL of the redundant colon out. (my transverse is extremely redundant) He removed the entire sigmoid and part of the upper rectum.. about 14"-18" he said.

Also, call the place you had your defecogram done or any other tests you recently had and ask them to fax or go pick up a report! You'll have the finding of the radiologist. I have all mine...

Want to give a quick big hug to Lizzie!!

I'll be back later - lots of running around to do and I have to dig out my papers and videos!!

Janie - yes - get the DVD or any pictures as well as reports! They are so important to have.. and I've learned - bring them with you to appointments!! Dr.'s always seem to lose reports!

Love ya all!
*** New Schdule Schedule July 26, 2010 **

~Jenise~


Chronic Constipation - last 20+ yrs.
Stage lll Pelvic Floor Prolapse ( rectocele, rectal, vaginal, bladder) Rectopexy, Sacral Colpopexy, TVT Sling - 8+ hr surgery - March 2009
Constipation increased, could not move bowels without excessive straining or laxatives - March 2009
TVT Sling Released - April 2009
Redundant, Twisted, Prolapsed colon found - causing mechanical obstruction Oct. 2009
Rectosigmoid Colectomy w/low anterior Anastomosis & Revised Rectopexy - Dec. 2009
Perineorrhaphy & Posterior Colporrhaphy (rectocele repair) - Dec. 2009
Today - using MiraLax daily,but still struggle to have a BM :(

** update: Surgery to fix rectocele and other pelvic issues 07/26/2010)**


answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 4/28/2010 8:37 AM (GMT -6)   
Jenise, have you had another defogram, anal manometry, emg testing? I would not go into another surgery without these tests atleast. You need the doctors to know what the rectum is doing before they attempt another surgery. Just my opinion, but having gone through my hysterectomy and 2 pelvic prolapse surgeries with absolutely no testing whatsoever makes me so angry. I had the outlet problem since I was 19, just not as severe as after my hysterectomy. The doctors should have done the complete work-up of testing, emg, defogram, transit marker, colonoscopy, ct scans, pedendal nerve studies, anal manometry, etc. BEFORE they cut my ass open. If I would have found this board before my hysterectomy, I would have demanded test after test. Then, I would already be fixed.

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 4/28/2010 12:33 PM (GMT -6)   

Jenise,

What Tracy is telling you is sooooo true.  Bruce Orkin, MD at George Washington University Medical Center does all these tests.  There are so many functional issues that may be MADE WORSE by surgery. 

Do have all these tests to see if the function of nerves and muscles is correct before having anything done for structural issues.  Not many docs can wrap their heads around the entire scope of this issue that we share (shared).

Even if Washington, DC is a flight for you, go for it!

Scheduled to be back tomorrow night.  So far so good.  I danced my feet off but am ready to get back to reality.   Rosemary


tinkerbell2
Regular Member


Date Joined Jun 2009
Total Posts : 418
   Posted 4/28/2010 4:24 PM (GMT -6)   
Yes, good lord - you girls remember how my doctors like to test! I have not had another defecogram..., but I have had a new pelvic MRI with Barium.. shows the function just like the defecogram, I strain and all.. but have to try and hold the paste in. (it's awful - I have to wear a diaper!) The colon doctor did all the other nerve testing, my nerve don't full react, and are in the low normal range.. but they told me, they can improve things, and make me much better, but they can't restore me back to 27 yrs old before the damage was done.

Today though, I discovered something I want to address with my doctor. I was examining myself - first real time I have since my surgery - and the back of my vagina towards the rectum, is all so hard and knotted - like a ton of scare tissue is there.

Anyway - Tracy, MY PICTURES!! It took a while to figure out how to get them off the disk.. but I got a few! Not sure if the will help you all too much, but at least you know what they are instead of some unknown on the internet.

The picture are in order, when you click the first one, go to the upper left side and pick full screen for a better view.

picasaweb.google.com/112661389715619200160/NewFolder#
*** New Schdule Schedule July 26, 2010 **

~Jenise~


Chronic Constipation - last 20+ yrs.
Stage lll Pelvic Floor Prolapse ( rectocele, rectal, vaginal, bladder) Rectopexy, Sacral Colpopexy, TVT Sling - 8+ hr surgery - March 2009
Constipation increased, could not move bowels without excessive straining or laxatives - March 2009
TVT Sling Released - April 2009
Redundant, Twisted, Prolapsed colon found - causing mechanical obstruction Oct. 2009
Rectosigmoid Colectomy w/low anterior Anastomosis & Revised Rectopexy - Dec. 2009
Perineorrhaphy & Posterior Colporrhaphy (rectocele repair) - Dec. 2009
Today - using MiraLax daily,but still struggle to have a BM :(

** update: Surgery to fix rectocele and other pelvic issues 07/26/2010)**


answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 4/28/2010 8:29 PM (GMT -6)   
Jenise, your defogram looks weird too! What was your diagnoses? And why does it curve like that when you are pushing? So glad your doctor has ran some tests. You definitely don't want to end up like me and never being able to push poop out. It is so horrible. And some times it is almost impossible for me to have a bm. The poop just gets stuck somewhere up high and won't come down. I haven't taken any miralax for several days, to give myself a rest from bm's....but, will break down and drink some tomorrow because I am already regretting doing that.
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