TOTAL COLECTOMY PART 35 THREAD 13

Hodaya,

LORD GIRL 20-47 WERE my best years! Auuuugh! Sorry poop took you over soooo young.

This is indeed a mystery, but others on this board have had their anismus overcome for the short time after they had their colons removed too. We all oughta be on a TV show here in the states called Mystery Diseases. I don't think any doc would fully understand it enough to be on it with us.

Yeah, Mine is the story of not just mystery disease but true negligence for money. BUT mine is the unique story. At least others on here have docs who care but at worst just don't get it, but at least they are trying.

Even if the Botox works you have to have it repeated every 3 months. THat is being put under general anesthesia every 3 months of your life. NOT a good idea.

SO whatever your development of all this was, I wish you well with your ileostomy. It is livable. When will it be?

Rosemary

Janie,

From what I know anything lying below the ischial tuberosities is descending perineum syndrome which is not fixable with surgery. What you need to do is ask to speak with the actual radiology doctor who does defecograms all the time. Not the technician, but the actual doctor. I have had great luck doing this (AFTER I got into trouble with that unneeded original surgery) BUT I have learned. They are real people and I have found are much more into communication than surgeons.

I have to go for a CT Enterography test to be sure there are no adhesion narrowings as I've had 3 food obstructions on very bland food (I cleared all myself) but still a cause of concern. I spoke to the actual radiology doc and learned sooooooo much. He was wonderful. Told me to show up nice and empty as you have to drink a ton of prep. Something I was not told by anyone else.

So call the radiology doc and you may get some very different information. Glad you are doing well with your routine and it is do-able. I would have gladly kept my original issue as it took me multiple times to move bowels but I moved a ton of poop every morning and had the use of colon and rectum and no adhesions on small bowel. So, was way ahead of the game.

My case is taking soooo many twists and turns. The latest is the original surgeons who took out my sigmoid colon which then strictured in and caused the loss of use of my colon and rectum actually did not send my sigmoid colon to the path lab. None of my reviewers nor I have any clue what they did do with it.

Instead they sent a 15.5 cm segment of SMALL intestine to the path lab. I have no clue whether they removed a length of my small intestine and did not put it in the op report or if that was someone esle's small intestine in the lab with my name on it. It was healthy but had the dimensions of small bowel not sigmoid colon. I had originally noticed this but assumed it was an error. One of my reviewers caught this. When I looked at the dimensions I knew the reviewer was correct.

So not only did I not need my sigmoid colon out after all (I had no sigmoidocele as erroneoulsy reported on the defecogram as verified by 6 pelvic radiologists who reviewed it after the fact) but nobody knows what the 2 original surgeons did with my sigmoid colon?

My case just gets worse and worse the more I learn. I sure hope I was not part of some harvesting scandal. BUT sigmoid colons are nothing that are transplanted, so why on earth would they not send it to the path lab?

Oh, well, it is as it is. My hope is that I have no narrowings from regrown adhesions and can go on my July 13 trip. Even if I have them and am doing just fine on VERY bland diet I think I'll just go anyway. The main thing I have not had any adhesion actual reobstructions, so that is the important thing. Hopefully I won't. Will be interesting to see how this CT Enterography scan comes out. I have it Wednesday.

Rosemary

Post Edited (esoR) : 6/20/2010 9:59:15 PM (GMT-6)

No sleep due to the prep....and this time, it was very difficult to get the liquid out. It was several, several trips for me to let out tiny amounts of water....UGGGG So, I know I am doing the right thing getting this surgery...not being able to poop water is the pits....

I am nervous, but not over the top or anything. Wish me luck! Tracy

Tracy - Today is your big day!  Thinking of you and praying for you.  

 

Tracy - hope everything goes very well.  I'll keep you in my prayers.

I went to my local surgeon this morning regarding the blood in my stool last week.  I also developed a major hemorrhoid over the weekend.  It was so bad last night that I couldn't sleep.  I popped a Lortab and inserted a hemorrhoid suppository.  It helped some. 

The surgeon removed the hemorrhoid this morning - 2 "giant" blood clots and about 5 smaller ones.  The numbing injection was intense but I was so happy to feel numb for about an hour.  While my butt definitely hurts right now (even with meds) I don't have that same pressure.

Ugh.  What another thing to add to my list.

As far as the blood - she thinks the blood was probably an internal hemorrhoid and it protruded out.  If in a few weeks I see blood again we have a problem.

In other news my Cleveland doctor FINALLY sent a letter after like five weeks.  Said basically what I believed he'd say - do the biofeedback but totally not necessary to remove my colon at this point.  I guess we shall in a few months after biofeedback is over.  If it doesn't work it looks like I'll be bothering my local surgeon to let me take it out. 

hey all, i saw my surgeon today and the surgery will probably be on July 8th, the secretary should confirm it still, but anyway somewhere at the begining of July. i've already informed my boss, he said WHAT? why surgery again.....?? so i just said, cause there's still a problem. i don't feel like telling him or anyone at work that i'm going to have an ostomy, not b/c i'm ashamed of it, but b/c ppl will maybe start feeling sorry for me and i don't want that. Janie, it seems you have better control over this than me, it's not working for me the way it is for you. good for you!! and i'm glad you don't need to see your surgeon any more, that's the best news :)) sorry i can't help much with your report, i don't understand all those turms. i don't know, maybe its best for you not to do the starr, cause i still suspect that maybe the starr caused my anismus and you sure don't want that to get worse. i'd say if you manage, keep it that way. after any gut surgery, the guts are stimulated for a while, the invasive act makes them more active, too bad it's only for such a short while. i'd also love to hear from Lizzie and Lori, so worried about them. Rosemary, thanks for the update on Tracy, i hope everything goes super well for her.

Rosemary, i'm a typist, i type reports ALL DAY..... SO BORING!! maybe it sounds like an exaggeration, at least it does to some ppl who don't suffer constipation or at least not as bad as us, they don't understand it, but when this problem took over my life i quit school and never tried again till today, just couldn't concentrate on studying anything. i just feel my whole life was wasted. sorry for being so depressed.

Hi Ladies,

 

I hope you are all enjoying your evenings/nights/days (depending on where in the world you're reading this from)!

 

Lizzie has been in a horrendous amount of pain, and she started dumping again. They had her take a little Lomotil today, and it all but stopped her output. After getting a hold of Cleveland, they told her to go the ER to be transferred back to Cleveland because it was too risky to put that much pressure on her valve. The on-call doctor at Cleveland was the same one who admitted her the Saturday before last (June 12). He said that no matter what, she needs to be there so they can get her on a regimen that she can live with. I like this guy! Hopefully he'll meet her at the door!!

 

Pray for strength and stamina for Lizzie. Her PICC has also stopped working, so pray they can get a new one in as well. Keep praying for TPN also, as she truly needs it. Pray that her pain and spasms following eating and intubation would decrease and stop. Pray for wisdom for her doctors, that they would act quickly to determine the problem, and what needs to be done so that sweet Lizzie can get on with her life!!!

 

Thank you all so much!! I'll let you know as I hear more!

 

Much love,

 

Allie

Barb,

If you've never had surgery you have a goooood thing going for you. NO prior adhesions. Now especially if your total colectomy is going to be done laporoscopically, then you won't have much chance of developing any adhesions from having your colon removed.

AND YOU were the one with the Super Defecogram....remember I congratulated you and said,"What only two pushes and you had the contrast out......Super Rectum." Then we laughed a bit about that, but it's true. You don't have any pelvic floor or rectal issues.

I think you are the perfect candidate for total colectomy with ileorectal anastomosis. I hope I remembered this correctly, but if so, it seems like all the cards are stacked in your favor. I wish you well.

Tracy........still snoozing I'm sure.....best wishes going your way.

Allie...thanks for update on Lizzie. I must be honest and say I am not at all surprised that this is happening (though saddened by this news of Lizzie as we all are.) BUT the fact that one doc said we need to keep her til they figure it out and get her on a regime she can live on means that CC is serious. With serious docs come miracles.

Good night all, Rosemary

HEY ALL I JUST HEARD FROM TRACY.....10:45 eastern standard time U.S.

The surgery was 3 and a half hours. More than the doc expected. Turns out she had LOTS of adhesions; some he said he thought she was born with. This does happen in rare occasions. He was still able to do the surgery laporoscopically and took down as many adhesions as he could without keeping her out for too long. He fixed the rectum intussuseption, removed the sigmoid colon and made the ileostomy stoma.

Her IV is inconveniently placed in her elbow vein so she can't bend her arm. Hopefully they will move this so she can bend her elbow. She actually has two IV's one is potassium which burns but then they diluted it with saline and it made it feel OK. Her potassium was low.

She's in a lot of pain but getting Dilaudid.

She saw her stoma and was not freaked out by it. They had to change her bag because a lot of stuff came out of it and leaked all over the bed as there was a hole in the bag. So they cleaned everything up and put on a new bag. That went OK. They thought it may just be leftover bowel prep that was in there. Or maybe her small intestine has already woken up. Kinda soon for that though but they could not really tell.

They said she could chew gum and suck on ice chips. Gum chewing causes air swallowing and gas, so she is just going to suck the ice and wet her mouth then spit the ice chip back in the cup. I told her good plan. She is determined to take it easy with food.

No ng tube in for surgery and none needed yet. So hopefully she will come along nicely and not need one.

She sounded a bit groggy naturally but was very coherent and summed up her condition well and asked that I post this update for you.

So all in all things are sounding positive. She actually sounded quite good for the night of the day of surgery. Surgery was 8 a.m. today.

Rosemary

I told her Lizzie was going back to CC and she sends her best.

Post Edited (esoR) : 6/21/2010 8:57:33 PM (GMT-6)

Barb, you ARE doing the right thing!!!! pls try to relax and focus on the positives, i know it's a scary step, i've been there, but i just shut my mind and tried not to think about anything and just do it and i'm so glad i did, i can't tell you how great it feels to have my colon out of me, it feels SO much better w/o it. even tho i still have constipation issues, i still feel so much better w/o my colon, the HORRIBLE pain i used to have is now gone, it just feels like you've been freed from a sick organ, feels clean. i hope your surgery is most successful and solves your constipation completely!! best wishes to you my dear!!! Rosemary, thanks so much for the update on Tracy!!!! sounds good so far, i hope she don't need the ng.... YIKES! that was aweful! if you talk to her again, pls send her my love and a huge hug!! thanks so much, Rosemary, for your words of comfort and encouragement, they mean a lot to me and made me feel SO much better :)) you're such a precious lady!! thanks so much for understanding! Allie, thanks for the update on Lizzie. i'm just so sad for her going through all of this, praying for her, pls send her my love.

Rosemary,

Thank you so much for posting Tracy's status! I was looking forward to seeing how he is doing. She sounds strong, and it is a good thing she hasnt had to deal with the NG tube! I know she was freaked out about that and was worried about it, so at least she got her wish!

And yes thank you....it always feels good to know people are out there, know what you are going through, and can support.

Much love,
Barb

Hi there,

I'm new to this forum, but not to Healing Well. I was reading thru some threads here and came across this one. Regarding the discussion of an NG tube being put in while you're awake...it's truly not as bad as you think. You're asked to swallow several times (and may be allowed to sip water as well) and with each swallow, the tube goes down a bit further until it's placed where it needs to be. You can feel it in your throat when you swallow, but it didn't make me gag at all, and I have a very sensitive gag reflex. Some doctors will lubricate the end of the tube with a numbing agent, and will possibly give you a squirt of something similar in the back of the throat to make it easier to insert the tube.

Once the tube is in, it just feels like having something stuck in your throat, like when you're eating and something doesn't go down quite right. It's not painful at all, it's mostly just irritating. When it was time to come out, I had a bit of gagging/coughing, but that was it. I have real issues with vomiting - I am not able to vomit anymore due to surgery for GERD. All I'd be able to do is dry heave over and over, and that puts strain on the body. I'm lucky as there is very little that makes me feel like throwing up.

Anyways, I hope this helps a bit regarding the NG tube...good luck to all of you here.

Pam