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TOTAL COLECTOMY PART 18

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Posted 1/25/2008 4:56 PM (GMT 0)

Hi All -- I'm new to the ostomy forum but not new to ostomy.  I suffered with UC for over 16 years before I had a total colectomy way back in 1981.  By the way, I had my ileostomy surgery at the age of 39 and am now a healthy (and young per my GYN) 66 years of age.  I received a call this morning from a prior neighbor who was suffering from UC when she moved from our block.  She has had a very bad flareup and was asking about my "ostomy."  I have had no problems whatsoever, no surgical revisions, no food blockages that I couldn't handle at home, and no more stomachaches.  I eat whatever I want, have to watch my weight or it goes up & up, bowl one night a week, walk three times a week, worked past the age of 65, previously did water aerobics but the water got too cold for my arthritis, and last but not least, volunteer with my hubby of 48 years at a Visitor Center in Colorado for five months every summer.  Life is good and God has been very good to us.

I would be happy to answer any questions.

ileo81

Total Colectomy & Ileostomy - 7/81

Medications:  Asulfidine, prednisone before 7/81

Posted 1/25/2008 7:26 PM (GMT 0)
Welcome Ileo81. You sound every optimistic. I am gald you have joined this forum. There are lots of people here looking for assistance...so explore this site and see what type of advice you want to offer. I look forward to reading your posts.
Posted 1/25/2008 8:22 PM (GMT 0)

Hi Felicia and everyone else,

I'm  Cathy W. 

I just wanted to let you know that even though I had a REALLY hard time back then, I'm better now than I was before the surgery.

Don't let my bad luck scare you.  Look at all the success stories posted here.  They way out number the 1 with the rocky road to success.  Statistics are on your side.

Cathy   

Posted 1/25/2008 11:01 PM (GMT 0)

Ile81 --  Good to have you aboard.   Welcome to HW.com !!!   Please feel free to chime in on any of the posts that interest you.  Also, please feel free to join us in the chat room on Tuesday evenings beginning at 8:00 pm and on Saturday mornings.  We chat about anything and everything and have a fun time!  Sometimes we talk about general stuff, sometimes we answer newbies questions --- whatever is on the plate at the time.  

Congrats on your good luck with your ileostomy...  you are definitely a great success story.

Posted 1/26/2008 8:31 PM (GMT 0)
Hey Cathy,

Yes your story was very scary. I am glad you are better now! I hope I can lose some weight after this surgery. I am having a hard time, probably because nothing comes out!

How did you deal with that tube for feeding?

 

Posted 1/28/2008 11:24 PM (GMT 0)
Hey Felicia,

I lost 29 lbs in the hospital, but I was there almost 6 weeks. My skin just hung down. I have managed to gain most of that back though.

The feeding tube wasn't fun. Eventually I made my husband take it out because it gagged me so bad I couldn't eat. In the hospital, I was so confused and disoriented due to infection that I pulled it out any chance I could, not really understanding that it would have to get put back in. They kept soft restraints on me whenever they left me alone to keep me from pulling out the tube. If they plan on putting one in, have them do it while you're still under in surgery.

If I could get through all that I did, you can do this! Don't worry about the "ifs", deal with them when (and if) they happen. Most things that happen, you can't plan for anyway. Who would have thought?

Cathy
Posted 1/29/2008 2:53 AM (GMT 0)
So I am sorta excited about seeing the surgeon... I feel that this needs to be done. I know that you all have put some questions into the mix for me to ask. I just need to find them. Is it true that they put a NG tube down while you are in surgery? Did any of you have one of these? I had one once when I was awake...never again nono   I will need a central line or a picc line because I have no veins except my anticubes which do not help in surgery. I wonder when my surgery will be scheduled and if it is right away. I hate having to wait! I want to recover quick.

 

Cathy- I am glad you are better now. I do not know how I would deal with that. Was it okay for your husband to take it out? Did you have the other surgery yet to reconnect?

 

So I know I will have a subtotal, but I saw that most have to go back for a Total?? Why is this?

 

ileo81- welcome! I am glad you found this site!

 

Terri- Why did you have a Tcolectomy for CI? Just wondering if this is better to have and do you have an ostomy? Do you need an ostomy for this type of surgery? I also have motility problems and well lets just say it barely moves...  What is lactulose?

 

 

Posted 1/29/2008 3:15 AM (GMT 0)

Hi Felicia,

Actually, there are a few of us that had a TC for CI. I was 'normal' until I had a colon resection because of chronic diverticulitis with fissures to the bladder. I tried everything from prescription meds to OTC stuff to no avail. The only way I could go was by drinking magnesium citrate, so that's what I did every Friday for two years.

I don't have an ostomy. They just hooked the leftovers to what's left of my rectum. I was hoping to once again be normal after the last surgery, but I guess it just wasn't meant to be. It was supposed to be a TC but the surgeon ended up changing it to a subtotal because part of the colon 'looked ok'. The doctor I'm seeing Thursday is a motility specialist at Stanford University, so hopefully he can shed some light on what is causing this. I'm thinking it's some sort of nerve problem...time/tests will tell.

Posted 1/29/2008 11:06 PM (GMT 0)
Hey Felicia, et al.,

My husband and I are both physicians so we know how to take out NG tubes.

I had the ostomy for about 4 months and then had the reconnection surgery. By then my white count had come down and my platelets had come down too. It also gave my insides a chance to heal. It took a while for me to recovery as well. It took a lot out of me. When I first got home from the hospital, I couldn't even walk up the stairs.

Many of those who have the subtotal colectomy have to go back and have the total colectomy because they didn't take enough to fix the problem in the first place. Total colectomy is the standard now for CI.

Hope this helps.
Cathy
Posted 1/31/2008 4:57 PM (GMT 0)

Hey guys  hope everyone is doing ok.

I have a question for all of you.  I had a TC Feb 07. The last two days my stool has been green and I have stomach cramps.  I went to the ER last night and they took blood and everything come out ok, so they  sent me home with bentyl and Toradol.  Wake up this morning still green.  Has this ever happen to any of you, and what was the out come.

Posted 1/31/2008 8:04 PM (GMT 0)
Green? Did you eat anything with food coloring? You may want to keep a diet log for a couple days and see it you are eating something that you may not realize that has a dye in it. Have you been eating anything inparticular lately?

I am glad your blood work was Ok. I am surprised your blood work was not low because you go to the bathroom so often.
Posted 1/31/2008 10:02 PM (GMT 0)

I went though everything I've been eating for the past week.  Everything passes through me so quickly.  I have a appointment with a GI tomarrow so hopefully they can give me an answer other then the ER doctor said everything was fine.  I can't stand not knowing what is wrong. I went on several job interviews and no luck, not enough computer experience.  I do medical billing so how much computer exp. do they want me to have.

Some one help

Posted 2/1/2008 2:35 AM (GMT 0)

Hi April,

I wouldn't worry too much about it. Stools can be green from a variety of things. It can even be caused by eating things that aren't green, i.e., foods high in iron. Stool is normally brown becaue of bile that is added during the transit time. In your case, when thing pass through quickly, there isn't enough time for the bile to turn it brown.

Sorry about the job situation. Do you do coding also or just billing? I sure could use a second set of hands at my office.

Posted 2/1/2008 12:28 PM (GMT 0)
I get kind of a greenish tint almost every morning after breakfast which, on work days, consitsts of a  cup of latte (decaf), a banana and a blueberry fruit bar.   Some days, it is fairly green --- I gave up trying to figure it out.

Posted 2/1/2008 2:10 PM (GMT 0)

Terri,

Thanks alot, I'm going to the GI this morning maybe I'll get some answers. I don't do coding just the billing area such as acct's receiable, posting submit to ins and so on.

Where do you live? I live in NJ

Posted 2/1/2008 8:40 PM (GMT 0)

So....I had my total colectomy on Monday the 28. I was doing good the first day, but by Yuesdat night I was all distended and nauseasted. I threw up over a liter wednesday morning and my surgeon was worried based on my vital I may have a leak or infection. Turns out I had an ileus, which he sayd is not too uncommon. I have been trying to work through it. They tried an NG twicw, but I could not handle it. I now am only nauseas in the morning....I have some stoll coming out, but still no bowel sounds. I have not eaten in 9 days, but I am trying today. I just wondered if this happened to anyone else. I rhink I pulled what muscles I had in my stomach from wretching during vomiting. I have been up and walking five times a day. still bloated and distended.

please write back,

lizzie

Posted 2/1/2008 9:05 PM (GMT 0)
I read that chewing gum help "wake up" the bowel after abdominal surgery.

Link:

http://www.cbc.ca/health/story/2006/02/20/gum-colon060220.html

Be well

Posted 2/1/2008 9:23 PM (GMT 0)
Thanks,  i will try anything

Posted 2/1/2008 9:28 PM (GMT 0)
Take gum with regular sugar,may i suggest.

Aspartame or other sweetner may give gas i think.

The article state "sugarless" tougth...

Be well

Posted 2/1/2008 10:40 PM (GMT 0)
Apri;l,

What did the Dr say?
Posted 2/1/2008 11:59 PM (GMT 0)

Lizzie

Sorry to hear about the problems after your surgery, I went through the same thing. The best thing to do is walking. As soon as they took the NG tube out I started walking. They also messed up my med so I was so filled with drugs, it was hard for me to  walk.  The nurses were no help, my husband was there most of the time to help Thank god for him.

Good luck on your recovery, let us know.

Posted 2/2/2008 12:03 AM (GMT 0)
Amey

Thanks for asking, he said he wasn't sure why my stool was green. He is sending me for

some test, I think a small bowel and something else can't read the RX and you know how

doctors are they don't say to much, he wants to see the results first.

I'm gonna try to go next week.  I'll let you know.

 

Posted 2/2/2008 9:28 AM (GMT 0)

Well, I saw Dr. Triadafilopolous on Thursday and we have a plan of attack. The 'theory' is that I have some sort of nerve and/or muscle damage. I was able to go normally before I had the colon resection in 2005. I had a low (possibly too low) anastomosis done, and he's thinking that's where the problem lies. Then when I had the subtotal done, that anastomosis had to be done below the previous one which makes things even lower.

While his PA was examining me, she noticed that I had absolutely no bowel sounds. She asked if I was having any pain and I told her that it was minimal. He then came in and also asked about pain. I think they were thinking that I had an obstruction, so I told them that I was able to pass gas so it was a non issue at the moment.

The plan is to have anomanometry testing done and then go for a colonoscopy with balloon dilatation again. This is scheduled for 2/29. We'll know more after that.

Posted 2/2/2008 9:05 PM (GMT 0)
Lizzie,
Glad to hear you made it through the surgery fine. I, myself am new to this forum. I have been checking out/researching A LOT before my surgery on the 18th. I think I had the "nurse-curse" as my friends were so kind to tell me. I had the TC on Friday, the 18th and ended up with an ileus. I was miserable!!! I tried the gum chewing and wondered if that made it worse? Anyway, after having 2 separate NGTs, (I took out the first one after a day or so b/c I've been down that road before and it's not fun.) Well, it had to go back in the next day and then I kept it in for 3 days total. But, it was worth it in the end. I also did not eat for 10-11 days from the start of my bowel prep. Like it seems as though almost everyone on this post has been satisfied with their decision to have the TC. I still question whether I made the right decision, but then I think about actually having BMs and it's been so long since actually being able to have one w/o assistance, it's a totally different lifestyle. I am still home recuperating. I've been worn out since the surgery, but each day seems to get a little bit better. I was so happy the day I took a shower by myself. tongue
Sorry if I rambled too much, but as I read some of these posts over the past few weeks, it's helped to know what others have been through. Hope it helps. Good luck with your recovery.
Becky
Posted 2/2/2008 9:10 PM (GMT 0)
P.S.
I am new to this forum, and a new TC patient, 2 weeks ago.
I just wanted to say "thank you" to everyone on this posting as your personal experiences have helped me to prepare for the surgery as well as let me know what to expect while recovering. I know it's going to be a long recovery phase, but am excited to be able to actually "go" now, after so many years of fighting. I just wish the gas would go away, I feel like a water cooler bubbling all the time... ugh!!!
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