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Total Colectomy... Part 12

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Posted 10/24/2006 1:59 AM (GMT 0)
I made it through it enough that there is no fecal matter in my stool. I am about to take my antibiotics and then off to bed. I have to be at the hospital at 5am. I will let you guys know how it goes. Take care.
Posted 10/24/2006 2:38 AM (GMT 0)
Hi Everyone,
Teddyb I hope everything goes good for you tomorrow.

I finally have my follow up appointment with my surgeon. It is for November 8, 2006. I called UCSF to see if they would give me a copy of my manometry exam. At first they said no, that it was being sent to my surgeon and that I could discuss it with him at my appointment. Then they called me back and said I could make an appointment for a biofeedback class because I was approved for 6 sessions. I am scheduled for one for Friday. They also emailed me a copy of the test results. I read through it and found doctors and nurses do not listen to well. The report states I have no rectal prolapse, but do have a small anterior wall rectocele. They also said the anterior wall seems to be prolapsing down but no rectal prolapse. I guess that is good and they can fix it during surgery, if need be. The report also states that if I do not get results from the biofeedback that the doctor at UCSF recommends a total colectomy. I am just so tried of taking enemas, laxatives, stool softeners, being bloated, being in pain, etc., etc, etc. Okay, enough.

Hope everyone else is doing great.
Posted 10/24/2006 11:42 PM (GMT 0)
Hello to all!!  I can relate to each and every one of you!!!  I've suffered my entire life with constipation.  I'm now 43 and after years of being constipated, bloated, and just plain ole not feeling good from this condition - I'm looking forward to my surgery November 9th!!  I've had all the tests done that determined colonic inertia and know the anxiety in anticipation of surgery and the toll it takes on one.

 

Thanks to everyone who has contributed on this post.  It's really hard to find a post that directly relates to this specific condition and sugery alternatives.  I've gained a wealth of information here!!

 

My question is this......Are any of you having this done laporscopicly?  This is what I'm scheduled to have.  I was told by my surgeon that recovery time is shorter and the possibility of scar tissue is minimal compared to open surgery.  If you're having it laporscopicly, how long did they say the surgery would take and how long will the hospital stay be for you?

 

Like all of you here, surgery cannot get here fast enough.  This condition absolutely takes over your life, which really isn't much of a life.  Anything has to be better that this!!!  It is worth any of the risks in my opinion.  I'm actually dreading the hospital stay over the surgery and recovery itself.

 

I look forward to hearing from any and all of you.  Your comments, suggestions, etc., are greatly appreciated.

 

 

Posted 10/24/2006 11:46 PM (GMT 0)

Hi Robin

My surgery was laparascopic.  Surgery took 4 hours as I had a lot of old scat tissue from previous GYN surgeries.  I was in hospital for 6 days.  I wasn't discharged until after I began having BM's.

Posted 10/25/2006 3:59 PM (GMT 0)

Phyllis - Thank you so much for the info!!  I too have had several GYN surgeries.  All eleven were laporscopic and one a laporodomy, where they actually opened me up in order to remove the endometriosis that had bound my female organs.  My last surgery was three years ago when they had to do a hysterectomy and it was done laporscopic too.  During my colonoscopy the doctor said my colon had A LOT of looping and was probably due to being constipated my entire life.

So, how have you been post op?  Do you think the results outweighed the risks and recovery?

Thanks again for your response!!!

Posted 10/25/2006 5:13 PM (GMT 0)

Hi Robin,

I am very happy I had the surgery.  I am no longer in pain.  My problem is that I go 15-20X a day and the surgeon says this will slow down in time.  I use imodium (I don't tolerate it well) and metamucil which is beginning to help.  Redmember postop when they are going to get you out of bed to use the pain pump about a minute before...this will help.  Calmoseptine ointment will help if you get butt burn it is over the counter med.

Even though I am going  often, I don't regret the surgery.  This is certainly better than before..

Good luck 

Posted 10/26/2006 6:42 AM (GMT 0)

Hi everyone,

Friday I go in for a gastric emptying test. Has anyone ever had this done? I went to a gastroenterologist for a second opinion about the colonic inertia and he ordered this test and wants to do another colonoscopy. I just had a colonoscopy done in March of this year by another doc. I had a small polyp removed but otherwise everything was clear. I feel like I'm chasing my tail. Meanwhile, I'm feeling sicker and sicker...the latest has been having a hard time digesting anything with feeling nauseated or regurgitation. I still have the distention, bloating and severe pain and I'm not able to move my bowels without the Dulcolax. When they do move I never have a feeling that I've completely evacuated as I always seem to have pressure and pain in the area of my sigmoid colon and bladder. Did anyone else have these symptoms with colonic inertia? I have made an appointment with a doctor in Portland (which is 5 hours from here) to get a total evaluation from her and if she concurs with the dx, she can do laparoscopic surgery. She trained at the Cleveland Clinic which I've read alot about in my research on colonic inertia. I'm still very nervous about the idea of having my entire colon removed. Anyone have any ideas or comments, I could sure use them as I'm at my wits end with all the testing that they've done.

gogently

Posted 10/26/2006 8:09 PM (GMT 0)

Phyllis - Thank you for answering my questions - greatly appreciated!!!  Also, THANK YOU for the tips - I'll take any tips that will help me along the recovery path LOL!!

Posted 10/27/2006 7:39 AM (GMT 0)

gogently said...

she can do laparoscopic surgery. She trained at the Cleveland Clinic which I've read alot about in my research on colonic inertia. I'm still very nervous about the idea of having my entire colon removed. Anyone have any ideas or comments,

Lots of people with Cleveland Clinic experience on the United Ostomy Assn Board - all 110% pleased with the doctors, staff, care and followup.  You'll be doing yourself a favor if you can get to Cleveland!

My rectum and anus were removed during APR surgery last February (rectal cancer) and I have a permanent colostomy.  I'm doing great ... you'll be fine, too.  :-)

Posted 10/27/2006 11:53 AM (GMT 0)

Hi

I live in NY and traveled to Clev eland Clinic for the laparascopic surgery.  The surgeon and care I received was unheard of.  What a wonderful facility.  I concur, if you can get to Cleveland do so.

Phyllis

Posted 10/27/2006 5:23 PM (GMT 0)
Thanks wmnak and Phyllis for your support. I live in Oregon and figured that if the surgeon trained at the Cleveland Clinic that she must be very good. Portland is about 5 hours from me so I will go there to have my surgery. My doctor has only done about 10 total colectomys in his career...I was feeling like I needed someone with a whole lot more experience and I'm comfortable now with my decision to go to Portland.
gogently
Posted 10/28/2006 4:30 AM (GMT 0)

Your Portland dr that used to be @ Cleveland should be good.  You are lucky to have found her.

My oncologist "used to be" at M D Anderson in Houston - he is terrific and has all the ties for referrals as well as all the latest info on procedures, treatments, etc.  I'm blessed.

When we can't get to the mountain, sometimes we find the mountain has come to us!  Good luck ...

Posted 10/28/2006 5:25 AM (GMT 0)

wmnak,

Did they diagnose the cancer previous to your surgery or find out afterwards? I have two masses. One in the bladder/sigmoid area and another at the spleenic flexture. They have not done ultrasounds on them as they showed up during some of the other tests I've been doing. After the gastric emptying, they did diagnose me today with gastroparesis so I now know that the upper GI is involved in the colonic inertia as well. The radiologist said my stomach didn't do anything for over an hour and then did what they call a 'dumping'. I have another colonoscopy on Wednesday but I don't think that it will reveal anything because most of the pain is on my left side and is now radiating through my back and hip area. So I don't think its so much as what is going on inside as outside. I have my appt with my Portland doc in 2 weeks and hopefully she is wise enough to figure this thing out. So pray for wisdom for her.

Thanks gogently

Posted 10/28/2006 2:54 PM (GMT 0)
Hi Everyone,
I had my first biofeedback session yesterday. The nurse wants me to stop taking enemas. She wants me to get a bottle of Magnesium Citrate to clear me out then start Miralax and fiber powder. She also wants me to do deep breathing exercises concentrating on the bowel and rectal muscles. No pushing - just relaxing and breathing while sitting on the pot waiting for the stool to come out. She says I need to retrain the bowel. Wake it up from a deep sleep. And MORE TEST. She wants me to get a Dynamic MRI and a defecography done. So on my visit with my surgeon I need to let him know so he can get another Off-Site Approval. She also wants me to go back to a GI specialist. She recommended one that works for my HMO who specializes in constipation, so I also need a referral to see him.
I also went to the other hospital that did my Sitz Marker test and picked up the X-rays. They put them on CD these days. I took a peek at them. I count all the rings.
The Manometry test found other problems, which I feel are secondary to the colonic inertia, in my rectal area and I understand how biofeedback might help in correcting those problems, but I do not understand how it will make a paralzed bowel work again. Anyone who has done biofeedback have any thoughts? Did it correct your colonic inertia problem? I need six of these sessions and they are spaced two weeks apart. So I see my surgery being delayed by at least six months.

I hope everyone else is doing fine and have a wonderful weekend.
Posted 10/29/2006 4:17 AM (GMT 0)

Gogently, 

My anal cancer was discovered during routine colonoscopy.  I'd had a clean bill of health after the previous exam, just 14 months earlier.  Due to the location on the anal vege, I had APR surgery in Feb of this year resulting in a permanent colostomy. 

Good luck with your tests... you're in my thoughts and prayers.

:-)   Martha

PS: I'm concerned that your small intestine may be involved.  Be sure to quiz your new doc about 'short bowel syndrome.'  Hope she can salvage adequate bowel for easy absorption of nutriants.


Post Edited (wmnak) : 10/28/2006 10:24:10 PM (GMT-6)

Posted 11/1/2006 4:31 AM (GMT 0)

Hey all... sorry for the lack of updates...  I just have been so out of it I haven't had the energy.

Right after my last post, the next morning I stood up out of bed and the bottom of my incision burst and about half a cup of liquid drained out of a seroma that had accumulated.  I went to my surgeon and he aspirated it and packed it with gauze.  No big deal, I guess.

I month after surgery I am having about 2 bms a day.  2 weeks ago I was hit head on my a driver and the airbags hit me squarley in the stomach.  My incision swelled and I lost the ability to pass gas or stool for several days.  They finally did a cat scan of my pelvis and found a 6 centimeter cyst on my right ovary that was causing some havoc and now they want me to go in and have an oopherectomy. 

nono   I DON'T WANT ANOTHER SURGERY. nono

I feel like it is my birthday every time that I feel the urge to go, but I am still so tired and weepy from the surgerys.  My hair is still falling out in hunks, so bad I had to chop it all off in a boyish haircut (which turned out cute actually...lol)  Everything makes me ill when I eat it, but I am ravenously hungry all the time to the point of dizzyness.  Has anyone else had any of these problems???  (And BTW, pears as a sole source of nutrition???  Eww.  I think I might just be able to stand that crippling nausea just to avoid an all pear diet...lol)

I am in pain from the cyst but slowly regaining ground after the wreck setback.  I am SO GLAD to hear that some of you are getting your surgerys soon, and hope that all of you waiting for answers get definitive solutions soon....     

Hugs and kisses,

vandgsmom

Posted 11/1/2006 4:26 PM (GMT 0)

vandgsmom said...

They finally did a cat scan of my pelvis and found a 6 centimeter cyst on my right ovary that was causing some havoc

Talk about a mixed blessing!  Dang ... took a head-on collision to get the cat scan that identified an ovarian cyst!  Just amazes me how often bad things have good outcomes.  At least now you know what you are dealing with and, hopefully, have some options.  I DO understand not wanting more surgery.

Thoughts and prayers coming your way.  Let us know ...  :-)

Posted 11/7/2006 7:13 PM (GMT 0)
Hello all! Well today is my two week mark and I am doing remarkably well.  I feel so much better, I am going about 4-6 times a day. Last night was rough with nausea and stomach cramps but other than that things have gone well.  My bandages came off last night and the incision marks don't look to bad. I am still unable to eat regularly I am off the bland diet and now on to the low residue. The surgery took longer than expected due to scar tissue and my colon being abnormally long with "kinks" in it.  I was in the hospital for 7 days and that was the worst part.  I never want to go back to that dreaded hospital again. I just wanted to give everyone an update, I am thankful for the surgery and look forward to getting my life back.  I hope everyone is doing well and I will talk to you later.

Teddyb

Posted 11/8/2006 2:47 AM (GMT 0)
Hi TeddyB

Glad to hear that all is going well. Now comes the easy part...just take care of yourself and go slow..
Posted 11/8/2006 3:08 AM (GMT 0)

CONGRATS TEDDYB!!!!   yeah

Even with the pain, the horrible hospital, etc, isn't is great to know that this is the beginning of a part of your life that does not revolve around your rectum??  lol

I saw my colo/rec surgeon today for my 6 week follow up.  He said that I can go to lifting 15-20 lbs, regular lifestyle, and expand my diet as tolerated (not much is tolerated, however..lol).  He asked me if even though we had all of these complications, if I was glad that I had gone through all of this and had the surgerys.  I started crying.  lol I am such a dork.

I am not there yet, but life is going to be so good.  I just know it will.  ;)

Posted 11/10/2006 8:45 AM (GMT 0)

Hi all,

Well tomorrow is the big day. I make the trip up to Portland Oregon to see the colorectal doc for my second opinion. I am so nervous. I had to drive all over creation yesterday to get my medical records and x-rays together (4 different docs and the hospital). I was just a zombie today. I had my 2nd colonoscopy for the year last Wednesday and the new doc told me I have diverticulosis. I have pretty much decided that my intestines are a mess. I'm really hoping the doc in Portland will be able to confirm that the  problem is really colonic inertia and do surgery soon. My husband is coming with me to see this doc. Usually he does not do well in doctor's offices. I'm so glad he's coming and can give me emotional support and be my chauffeur because I'm so foggy half the time that I would probably be driving around in circles for hours trying to find the address! Don't laugh...been there and done that!

At this point of my life I feel like I'm just sitting in my chair watching the world go by and playing the waiting game. Pray that I can at least get this doc to do an exploratory laparascopy to see what in the world is going on with my gut and pray that she schedules it for next week because that would be fine by me. Martha, I will ask her about 'short bowel syndrome' too. I'm so glad to hear that Teddyb's surgery went well and that vandgsmom is doing better...BTW I didn't mean a main stay diet of pears and yams...that would be yucky!!! They just said foods with a high fiber count. But what do I know...I had a bran muffin three days ago and I think I can see it sticking out from under my ribs! No telling when it will see the light of day again  eyes

Well I better go and try to get some sleep because I have a 5 hour drive ahead of me tomorrow just getting there. Thanks all for your prayers and thoughts.

gogently

Posted 11/10/2006 11:51 AM (GMT 0)

I've been on the road the last few days, 1,134 miles, AL back to TX.  Glad to read about ya'll being on an upswing!  Anxious to hear, Gently, about your appointment in Portland.

I've got all my 9 month follow-ups scheduled with local docs between now and mid-December ... will let you know.  Stoma is behaving, but I'm a bit concerned about having my first postop colonoscopy via stoma.  Anyone done this?

:-)    Martha
Posted 11/10/2006 4:55 PM (GMT 0)
Wmnak --I have never heard of doing a colonoscopy via stoma before.. surely it can't be much worse than doing it the old fashioned way..lol We ALL know about that.. Where are your followup appts at in TX?


Gogently-- yay for you! I wil be praying you get the results that you need in order to get help.


From the minute I had my surgery until the last few days, I never had a control issue. Not once. But the last few, it seems like every time move around suddenly or sneeze ( i have a cold) or breath too deep that I lose it. I don't understand it. Did anyone else lose bowel continence weeks AFTER their surgery???

and btw, my meat market has made me some ground chicken breast that is SOOO good. AND it dosen't bugger me all up. Mmmm. Tastes like chiken!
Posted 11/10/2006 5:20 PM (GMT 0)

vandgsmom said...
Wmnak -- Where are your followup appts at in TX?

Deep South East Texas, 4 miles N of the border.  Temps mid-90's today.

:-)  

Posted 11/13/2006 2:26 AM (GMT 0)
lol... my ex husband and all my family live in the Jasper/Lufkin area. I didn't know there were any specialists in that neck of the woods.

............................

Any takers on the continence issue? It is really getting to me.
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