TOTAL COLECTOMY PART 35 THREAD 13

Hi All, We got locked out of the last thread so I am starting new one for us.

Tracy and all newbie ileostomates and ileostomates to be, I just wrote a dissertation in my best efforts to help Christine. See my (hopefully helpful) hints on the thread called Rosemary that Chris started. I wrote this as I experienced things, but feel free to add helpful hints I may have forgotten.

Marisa,

YES YOU GO GIRL! THAT WAS A GREAT VENT! I SOOOOO AGREE. WHO THE H------ COULD POSSIBLY THINK WE LIKE HAVING ALL THESE ISSUES? IN MY EXPERIENCE OF BEING LOCKED IN THE PSYCH WARD BY A HOSPITAL THAT DIDN'T HAVE A CLUE HOW TO TREAT MY INJURIES (injuries necessitating the ileostomy), I began to think who's nuts me or them?

I sure hope Lizzie can be helped too. I could send her to Lahey where I finally got help. If they figured out all my injuries, they could figure her out I would think. Lahey actually has a specialty listed as "complex reoperative colorectal surgery." ie. they fix other docs screw-ups the best that can be done OR they fix things done correctly that simply had poor outcomes by doing something DIFFERENT! DIFFERENT being the key word here. I really hope someone looks at Lizzie from different angles. That poor girl has soooo much going on. jeeze. Prayers continue.

Well, hope I started this thread right. Rosemary

I begged one of my gastro's for the pills - she was super hesitant, but finally gave in. It was bittersweet. They're horse pills that taste like a salt lick!

Glad you made through it :)

Christine,

I had to have my ileostomy due to severe adhesions which totally disabled my colon and rectum and for 7 months disabled my small intestine.

My original adhesions came from 7 procedures being performed by 2 money-hungry surgeons who are not in medicine for the normal reason docs are in medicine. They "fixed" internal prolapses I did not have, removed my sigmoid colon when it did not need to be (later bore out on expert witness review of pre-op defecogram scan....my sigmoid colon was not blocking off my rectum creating incomplete rectal emtpying. Wrong diagnosis by resident radiology reviewer not cross checked and co-signed by her teacher lead to 3 colorectal surgeons telling me I needed my sigmoid colon removed. I did not know at the time of course that the scan had been read wrong. Then one of my surgeons I had also raised my bladder when it did not need to be thus over correcting it. Then he resusended my vagina from my back bone when it was not prolapsing, fixed a rectocele I didn't have, and on and on. These guys were into slash and burn surgery, procedures for dollars. I have a huge law suit going on. THey also were just going to let me die. They scarred my colon, rectum, and small bowel shut so I could not poop or eat for 13 months.

I had to see 11 surgeons cross country at 7 medical centers before I could find the one who would do what he could to save my life. THis guy is great, but he had very little to work with. Due to my 2 original surgeons I of course had severely scarred small bowel to begin with and had chronic small bowel obstructions because of it. So this second doc at Lahey got my small intestine out of severely dense adhesions, put in a sheet of Seprafilm adhesion barrier and made me the ileostomy. He saved my life the best that could be done.

Wrap wood, so far and it's going on 3 years, I've not had an adhesion reobstruction. Keep in mind he could not do all this lap as the first surgery had been done open. So that is two open surgeries and my previous hysterectomy (which on review I found out was unneeded too.) I fell into the hands of several money hungry surgeons in my end of the state (Western Mass), This last surgeon at Lahey near Boston did the only thing that could be done to save me. I have had 3 food blockages which any ileostomate can get, but keep in mind I came into the ileostomy surgery with severe damage and adhesions. I am getting a CT scan next week to just see if any narrowings have recurred from adhesions. Even if they have, and if I never reobstruct (reobstruction from adhesions is far more serious than a food blockage) then I just plan to live with the narrowings and eat bland.

So, if you are just going in for a basic lap ileostomy you would not have all these adhesion issues pre-existing. So you would do fine.

You would still have to chew, chew, chew and drink a lot of water, but any ileostomate would. So I hope this puts your mind to ease. You are coming into this through disease. I came into it through iatrogenic injury (that is injury incurred in my first surgery for the internal prolapses I did not have.) THe original surgeons did not list 7 procedures on the consent form. I would not have consented. I also checked them out with the mass med board who covered for them. In reality they had 6 law suits against them at the time. I did not know about skulking around court houses to find law suits on docs. They are now up to 9 suits. I got caught in medical crime. You will not.

So don't let my experience put you off. If not for my ileostomy I would be dead now instead of going on world cruises.

Hope this puts your mind to ease Christine. I did not roll out my whole story as I wanted to keep the focus of my response technical info and keep myself out of it. I should have told you I came into this with severe adhesions which you do not have.

Sincerely, Rosemary

Monday, wow Tracy, that was quick on a surgery date. You will do great. I also threw up a lot with those darn bowel prep drinks. The last one I had to do they made me drink it in the waiting room. Well it was warm and that just made it ten times worse. Then having all these people looking at me as I am gagging with every drink. So, I thought hey, I can go to the bathroom. So I went and took my bottle with me and poured what I had left down the toilet! I just could not do it anymore. I never want to drink those "fruit smoothies" ever again!

Rosemary, it is good to vent now and then. Its just so dang frustrating when the medical professionals do not listen to us. Its just easier for them to say we are nuts and send us on our way and then proceed to go to the bathroom and take a big old crap!! I just wish they could feel our pain for one week.

I went and donated blood today. It was so easy. I just figured I needed to give because I have received many blood transfussions in my life that I needed to be the one to give for a change. I have to do something good every once in a while.

Tracy - I'm so glad that your surgery will be soon. Monday! Keep close to us until then, hon.

Thanks for starting a new thread Rosemary.

We got back from Cedar Sinai last night. Of course, things couldn't go smoothly . . . why can't I be normal? Woke up Monday morning with a severe headache, dizziness (the worst I've ever had) and nausea. I think it was food poisoning. But had to go through the tests because there is no way I wanted to travel there again.

The anolrectal monometry went well. The doctor who performed the test said all was normal except that I am very sensitive - my urge to go is triggered with much less pressure than usual.
By the time the second test - the methan test - came around I couldn't even sit upright. I spent two hours laying on the floor against the wall. Every 15 minutes I would blow into a bag that hubby had prepared for me. They said the results of that test would take 48 hours to record.
The next day was the gastric emptying test (isotope eggs). By then I was feeling back to normal so it was a breeze. I didn't realize that I would have to lie absolutely still for two hours while they took a movie of the process.
Needless to say, I didn't get copies of the medical tests, etc. because at least two of them had not been completed. That was a big dissappointment. I think that I will enlist the aid of my gp in getting them if I have any trouble.

Sunday night, after we got settled into our room, hubby and I decided to walk down the street to get something to eat. We ended up in the middle of the 2010 gay pride parade of West Hollywood. It was wall to wall people and loud music. But we enjoyed the atmosphere and didn't feel the least bit out of place.

Any word on Lizzie? Rosemary

Hey val, thanks for the laugh today about the parade. Just got a mental picture which was quite humorous.

Spoke to Lizzie again and she now has an NG tube. The doctor does not know exactly what the problem is.....

Post Edited (answers4me2) : 6/16/2010 6:35:01 PM (GMT-6)

Hi Everyone,

 

Here's the update on Lizzie...sorry for the delay, but it's because they still don't know much :(

 

She was admitted to Cleveland Saturday night. For a couple days, she had very little output, which is very concerning, as she had been dumping so much previously. On Monday, I believe, she started dumping again. Through all of this, she has been in an extreme amount of pain, and has been more and more distended.

 

They did an x-ray a couple nights ago and a barium study yesterday morning. Those both came back normal. While extremely frustrating, the good news is that nothing seems to be wrong from a structural standpoint. She is on fluids around the clock, and is getting potassium and magnesium. It didn't seem to matter what she ate (pudding, Gatorade, yogurt, etc.), the distention and pain only got worse. They just put an NG tube down about an hour and forty-five minutes ago to help relieve the distention, and GI is coming in to check things out.

 

Keep praying everyone!!!!! They're still trying to figure out what is going on. I'll let you know as soon as I know more!

 

Much love,

 

Allie

Hey Tracy,

Monday Monday Monday - good luck! This will be exciting as well as a little scary - but good scary! I will be thinking of you and hope all goes well, and things improve dramatically for you!

My total colectomy is a week from tomorrow, so next thursday. I am still going back and forth in my mind, but I keep reminding myself that this is a good risk to take, because the way I feel from day to day is no way to live.

You scared me a little (ha ha, but no worries) about the NG tube and waking up after the surgery. I need to prepare my mind for what is to come, even if it is uncomfortable and hurts. What exactly is an NG tube? Maybe a silly question, but this is my first surgery ever and I have no idea what is coming. Also, how long do people feel icky afterwards?

Oh, I am glad things are moving along for you. GOOD LUCK TO YOU!!! I am thinking about you!

Bee

ANYONE WHO KNOWS....before the surgery will they suck out any excess fluid? I am really scared that there will still be "stuff" inside after taking the GOLYTLE? There is usually leftovers and excess liquids...I dont want that to be an issue. :S

snugglesaurus-

What are your personal day to day symptoms? I, too, have been diagnosed with Colinc Inertia (even though they say it is a phenomonon and they could never really tell if someone has that).... I have my total colectomy scheduled for June 24th (next thursday). I am super scared but very very hopeful. I know that I cannot live this way, so for me it is "time" to go forward with the surgery.
I have been in search for an answer through colonics, different diets, fiber&water, colon cleansers, laxatives, herbal teas - you name it....and nothing. I really truly believe that all that stuff over the last 2 years has made my issues worse, andn now I feel like I have no choice other than to go forward.

Bee

Hi Marisa,

Do you have a Sam's Club or Costco where you live? I get my Miralax in a double pack at Sam's club. They are the large bottles and are about 27 dollars for 2 - so I save ALOT when I go there.

I agree that it feels like cement in your bowels though....and it doesnt move until you take miralax and they it just ets more mushy. I usually takke some before bed and then I can release some in the morning, but it is never all of it...and I have sloshy tummy all day long! So hate it. When I push on my tummy its like a little river in there! yuck!

Also, you said that the laxatives possibly effect your small bowel? You had a Total open colectomy with illiorectal anastomosis...and you are still feeling this way??? I have been on and off laxatives for 2 years, and it has worsen my large for sure. I took all the small bowel exams, and everything checks out good.

Much love,
Barbara

Barbara, an NG tube is a catheter they shove down your nose into your stomach! It will suck out your stomach contents if your intestines are asleep. I heard it is very scary to have done while you are awake. I don't want that to happen to me. EWWWW I am going to ask my doctor if he places them while I am asleep...but, I have read the intestines wake up quicker without an NG tube. Then of course, if you get an ileus, you would have to have an NG tube placed while you are awake.

To be honest, I am more scared about having to get an NG tube than anything else. But, I have a throw up phobia, emetophobia, so the thought of throwing up just throws me into a tail spin.