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TOTAL COLECTOMY PART 35 THREAD 13

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Posted 6/22/2010 11:16 AM (GMT 0)
Hi everyone!

I'm still on vacation (traveling in motorhome).. and we are finally heading home after 3 weeks. I'm ready to get back home! I thought of Tracy all day yesterday, but couldn't get internet for the past 10 days. Glad to hear her surgery is over.. praying it will work!

Great news that Lizzie is out of hospital (again). Poor girl has spent way too long there!

My surgery is next month... want it over with. I've been pretty good with taking the Miralax.. things do move through, but I still don't think it moves through right. I know my 8 yr old goes much more than I do... BUT i go, and I go almost each day. Just hard to eliminate because of the prolapse.

I still have the order for the sitz marker study... I decided not to do it because I don't think I would ever want the remaining colon removed after knowing all the issues so many still have, but I'm tempted to find out how slow it is. My GI doctor called last week and encouraged me to have it...

Anyway, glad I have internet again, hope everyone else is well. I have 3.5 weeks of catching up to do!
Posted 6/22/2010 4:14 PM (GMT 0)
Barb, honey, you're most welcome! oh lets just hope your surgery is a huge success and there will be no more hurdles for you to deal with, cause there ARE lots of success stories, i've read about them in the older threads. i'm glad you found this site, cause it's really hard going through this all alone, i felt totally lost till i found this site and all the wonderful women on it. Pam, thanks for sharing your experience regarging the ng tube, but still, i really hope i don't need it in my next surgery, last time i had it was enough for me. Jenise..... SO good to hear from you girl!! you wouldn't believe it, but every time you are missing for a while, just when i log in to ask if anyone has heard from you, i find that there you are!!! it's just so truly funny! i remembered your surgery was scheduled for the 26th, but i couldn't remember of which month, well i see it now in you signature it is July. the surgery is for your prolapse, right? correct me if i'm wrong. i'm having my ileostomy surgery probably on July 8th, it may be rescheduled to the 6th, i'm still waiting for the confirmation on the exact date, but anyway it doesn't make much difference to me. i hope this surgery improves things for you. again, good to hear from you hon :))
Posted 6/22/2010 4:59 PM (GMT 0)
Hi Jenise,

Good to hear from you. Lizzie is back at CC, again. As of last night Tracy was doing OK for having just been operated on. Tomorrow I have a CT enterography to check for small bowel adhesion narrowings because I had a 3rd food blockage. But been fine since eating blander. Plus I passed the food blockage on my own. BUT need to at least know what the heck is going on before I take off on my July 13 cruise. One thing I gotta say for all of us is NOTHING STOPS US from doing what we gotta do.

Newest in my medmal case, as I posted before, all began with misread of a defecogram saying I had a sigmoidocele when I really had only an enterocele that was not hindering rectal emptying. So didn't even need my sigmoid colon out to begin with. (I SHOULD'VE been a radiologist not a school teacher.) Anyway, what else was "Discovered" was the original surgeons removed my sigmoid colon but did not send it to the lab! Instead they sent a loop of small intestine. They did not put on my op report that they had removed a loop of small intestine. Nothing was diseased. No reviewer has a clue why they would remove part of my small intestine as all you do for an enterocele (internal descent of small intestine instead of internal descent of sigmoid colon) is to suture the pelvic defect through which the small intestine falls, you don't remove part of the small intestine. WHich leaves the question, WHAT DID THEY DO WITH MY SIGMOID COLON?

I kept Tracy pleasantly amused by this question prior to her surgery for some comical distraction! (At this point my case would be comical IF I had not sustained such permenent bodily injury with possible future sequela). But it sure was fun tossing this question to Tracy to help her laugh and get her mind off her own surgery for a minute or two. You should have heard her say "What the H--- did they do with it?"

Our new puzzle on this forum needs to be: Where IS Rosemary's sigmoid colon if not in a lab and not in her? I have no clue what my original surgeons would've done with it. BUt being their 9th suit, they likely have their minds on other things. Such as malpractice premiums?

Anyway, Welcome back, Rosemary
Posted 6/22/2010 11:09 PM (GMT 0)

Hi all,

 

Its been so long since I have been on here.  So much going on with you guys.  I can't believe Jenise and Hodaya are having more surgery.  I have been keeping up with Lizzie via FB.  She has been through so much.

 

I have been doing pretty good since surgery. I have been really busy with work and running the kids everywhere. 

 

I am wondering if any of you have had increased issues with UTI's since surgery.  I am having them frequently. Right now I have one, well I guess that is what it is, and I am having bad lower back pain.  Anyone else dealing with this.

 

Jen

 

 

Posted 6/23/2010 12:27 AM (GMT 0)
Hi Allie,

thanks so much for your concerns.

I have been in the hospital for the last 1.5 weeks due to another hickman catheter infection with sepsis...in the meanime I have had enough experiences with catheter infections and sepsis so that I can easily recognize the symptoms.
It was my 4th infection within 5 months. Nobody can say why I seem to pick up every bacteria under the sun but I am sure it has something to do with my UTI, bladder catheter and urogenitay infection/inflammation as well as my deranged bowel motility/bacterial overgrowth. I still don't know if I can keep the catheter, I will have to finish iv-antibiosis first at home.

They sent me a psychologist to evaluate if I I refuse the catheter and contaminate it intentionally!!! I am so fed up with these psychological accusations and evaluations. This time I was really sick and the infectios seemed to be difficult to treat which did not hinder them to get me on ORAL antibiotics after only 2 days of iv- antibiotics when they know I don't absorb drugs that are orally given to the full extent.
I struggled to get back to iv-antibiotics...After those two days I had a severe deterioration of my condition again..probably new bacteria had built up since it was the first time the hickman catheter was flushed and used for iv-antibiosis. My GI doc did not know anything about this and when I told him how inadequately they treated me again (although I have been at the same unit for the last catheter infections) and how many things went wrong (not only the issue with the oral antibiosis) he could not believe it and agreed that the oral antibiosis were harmful.

in addition I have increasing problems with my metabolism..something is going on there as well. I have a strange combination of low TSH which is usually seen in hyperthyroidism and low fT3/fT4 which usually indicated hypothyroidism. I will have to undergo a MRT since there may be a benign tumour in my brain that could cause deranged hormone levels and impaired metabolism.
I never seem to be the standard and that's what makes it so hard to be believed and taken seriously by the docs. I can't do it the right way: If I am very underweight I am accused of being anorectic, if I gain weight by parenteral feedings I am yet anorectic since I was not able to gain before and if I don't seen to need much calories now due to a very reduced metabolism they begin to doubt the severity of my gut condition and think that I fully absorb all I take orally in. But that's not rea, I can feel it, I don't absorb better but I don't need much any more.

Concerning the bladder issue I have still no perspective although I contacted many urological clinics. I haven't heard anything from the biopsies either.

Post Edited (pelztier86) : 6/22/2010 6:50:04 PM (GMT-6)

Posted 6/23/2010 12:49 AM (GMT 0)
Oh Peltz,

I am sooooo sorry to hear of how you were accused of that stupid psycho thing again. They ought to be ashamed of themselves. Anything complex and they bring in the psych's. Jeeeze.

Know that we are with you with all your issues; you have way more than any one person I have ever heard of. I wish there was something I could do for you. I do know about that refeeding syndrome. Because the metabolism slows we gain weight fast, but it does not mean we are nourished.

I wish you well. Good to hear from you.

Good to hear from you too Jen. So far no UTI's and hope I don't get any. I think all of this pelvic surgery interrupts so many nerves and blood vessels that our anatomy gets severely screwed up. Maybe someone else can best advise you on this. Good luck with this as that is painful. I had one about 20 years ago and one was more than enough.

WORD FROM TRACY -------

IN THE MAIN DOING OK, but still in pain. Then they ran out of ileostomy bags and they put a urostomy bag over her stoma temporarily until they could get more ileostomy bags. Oh, Lord. She needs Benadryl to counteract the itching that the antibiotics give her. SHe said this always happens.. She said the surgeon took out about a foot and a half of colon as her sigmoid was really redundant. She is sticking to ice chips but has been offered broth, italian ice, and jello. I said maybe a teeny tiny taste of the italian ice might be OK. She is wisely being cautious so as to avoid the ileus. She has the right idea. The stuff that came out of her stoma yesterday was just left over prep and she really has not expelled any gas yet and is bloated. BUT there is some slight signs of awakening guts as she is hearing sounds and there is fog in her bag. Fog in the bag is a GOOD SIGN. She seemed pretty good and is off to take a nap.

MEANWHILE.....back here in Massachusetts I hit a huge black bear on a major highway today with my car and feel horrible about it. He came out of trees on the median strip and must have run at 50 miles an hour across the north bound lane in which I was travelling. major highway so I was going about 65 mph. The impact was horrific and I saw smoke, then he limped off. I think the smoke came from my tires as my car was OK and I was too. BUt I was so sad I called 911 and they said they'd find him and if he is injured they will put him out of his misery. Injured bears are also dangerous. Oh, Lord. But the cop said could have been bad news if it had been a big dear as they usually come through the car windshield.

So am just as glad I'm not having my CT Enterography test tomorrow with a bear paw print on my forehead or an antler stuck in me. Oh, what a day. I hope I don't have any adhesion narrowings but we will see. I feel fine on bland food. But really don't have much appetite. But as long as I'm not obstructing it's a good day (my mantra). All might just be fine; I just know potatoes are not for me no matter what.

Take care all, Rosemary
Posted 6/23/2010 5:48 PM (GMT 0)
Jen, so good to hear from you, and even better to hear that you're doing well :))) so happy for you! i'm having an ileostomy done on July 8th or the 6th, i hope i adjust to it well, but anyway, i'm totally whole with my decision. all the best to you dear!! Sarah, (((hugs))) so sorry to hear about all your struggles. my heart just breaks for you, such a young lady who can't live the life she so deserves, just so unfair. and maybe you dont know this, but i think about you a lot and about all your difficulties. i hope some day you get well enough to enjoy life like you should! Rosemary, thanks so much for the update on Tracy!! sounds normal for this stage post op, hope she gets better more and more every day! did you send her our love?? love you Tracy, hang in there you're gonna make it!!!! OMG.... poor bear!!! don't be hard on yourself, Rosemary, it wasnt your falt. but your comments are so funny lol! good luck with your test!!
Posted 6/23/2010 8:20 PM (GMT 0)
Glad you're OK Rosemary - I can't imagine hitting a bear. I smashed into a semi truck going 70 back in February and it still haunts me.

Don't beat up yourself!

peltz - sorry to hear about all the issues. None of them sound like any fun!
Posted 6/23/2010 9:19 PM (GMT 0)

Hodaya,

What kind of problems are you having that is resulting in an ileostomy? I have not been keeping up with HW like I should.  Are things just not moving...blockages..something else..I worry all the time about something going wrong with my hook up.  I will keep you in my prayers I am sure that your decision was not an easy one.

Jen

Posted 6/23/2010 9:54 PM (GMT 0)
So it is the day before surgery....oh man...
I am taking the GOLYTLE right now. I am 4 - 8 oz down, about 12 more to go. :(
NOthing has moved out yet. My tummy is getting irritated, so I am sure soemthing will start (cross my fingers)
I have been really constipated this week so I am worried it wont all come out.
What if it doesnt all come out?? Will they flush out the rest before?

Im worried....
Posted 6/23/2010 10:18 PM (GMT 0)

Sarah- My goodness, sweet girl. I am praying for you! I hope and pray your doctors can get some kind of game plan set for you. I have to run out the door, but I will get a longer response to you. I am so sorry you are struggling and suffering like this.

 

Barb- Praying for you! The prep is miserable...if your stomach isn't tolerating it, just slow down. If there is prep remaining, they will suck it out, don't worry. I had my surgery three years ago when I was 21. I still have issues, but my entire GI tract is goofy. The total colectomy was, hands down, the best thing I have ever done for myself. It only gets better from here...you can do it!!! If you have any questions, ask away!

 

Allie

Posted 6/23/2010 10:29 PM (GMT 0)
Oh thank you Allie. I am just so worried that I will have "stuff" left in me. When I asked the surgeon, he just said take the drink and dont worry about it.... I asked him again, and he said the same thing, but didnt tell me why not to worry. IF they will suck it all out then I will be happier and feel better about it...ha ha...I am about to take drink 8 more oz , #7....
I have gone a little and yes, my tummy hurts.

I really hope I feel better after time. I am looking forward to it. I have no idea what to think now, I have never had surgery and I dont know what to expect - pain wise, hosptial stay wise - everything wise...What was it like for you?

You were only 21??? Wow, very young. I am 31 right now, and do not want to live constipated one more year, day for that matter.

I will probably be on this site all night and as I take my prep just to get some insight, and try to "talk it out" so I dont get too nervous, or scared.


I didnt even have a breakdown....well, until yesterday - that is. We had a little meeting at work, and my boss wanted to talk to the group about my time away and wish me well. It was nice. When I got to the part to thank him and everyone for their support, I cracked!! I didnt even know that was going to happen until I tried to say "thank you"....I couldnt even speak, and the tears started. It was intense! ha ha, and a little embarrassing, but I was so happy that my group was very supportive.

Yah man.....tomorrow is going to be a crazy experience!
Posted 6/23/2010 10:49 PM (GMT 0)
i just wanted to check in....i have been in alot of pain, but it is gettin better/ the stoma started producing yesterday, lots of green water. i startes throwing up this morning and have felt like hell all day. my doctor said no more sips of water, justn can suck on ice cubes. i feel terrible, but am hoing this is temporary. I will be in here the weekend, maybe longer. I did have most of thesurgery lapo, but he had to open the c-seciton type cut to get out scar tissue
Posted 6/23/2010 10:53 PM (GMT 0)
Hey Tracy,

I saw you were online, and was hoping to see a post from you!
I am glad you made it through, I am sure you are in a lot of pain, and believe it should only be temporary!! - you have been through a lot, so the pain is expected, but it will be up hill from here, I just know it!
You are well enough to type, so that is a good start!!! I am hoping to be able to write soon after my surgery (tomorrow) and let you all know the status of things.
Keep suckin away at those ice chips and soon enough it will be your most favorite foods.

My heart goes out to you. Glad to hear from you!!

Barb
Posted 6/24/2010 12:09 AM (GMT 0)
Hi Barb,
Yes, they will just suck out what you cant get out of your colon from the prep. As long as you get it watery, you've done your part. You are likely going tons by now.

Tracy,
Glad you're back on line. I just left a message on your cell. Glad the stoma started putting out bile (green) that is good. Good thing you stuck to the ice chips only. Go easy on even those as the throwing up this a.m. means your gut is still very sleepy.

My CT enterography went fine today. For contrast all they had me drink was water as even the non-barium contrast would have gone through too fast. So I drank about a quart in 30 minutes and that was it. Then i had the iodine IV injection that just makes you feel warm in your bladder. And the scan was real fast. 10 mins or so. The surgeon showed it to me and NO NARROWINGS!!!! YEAH!

This doesn't mean I can't ever have an issue. I still have to eat bland and drink lots of water, but at least it looked as though nothing was lurking and He wished me a happy vacation. So that is GOOD NEWS for me.

My car is OK from hitting the bear. Hope he is OK too, maybe just bruised. It was amazing how strong he was. Glad I don't have a bear paw print on my forehead.
Rosemary

PS Tracy if you're not up to it don't worry about calling back. Your second full day out from surgery is apt to be the worst.
Posted 6/24/2010 12:37 AM (GMT 0)

Hey ladies!

Sorry it's been awhile since I've updated everyone.  Last we talked I was a little over a month out of surgery (total colectomy with anastomosis) and constipated again!!!!! Well since then they have put me on miralax 3 times a day and amitiza twice a day and I am still only going about twice every other day.  Today I had a sigmoidoscopy and they discovered that I have a sharp curve in my intestine close to the anastomosis site which its likely to be causing my constipation and pain.  The doctor believes that the stool is unable to make it past this sharp turn.  He is contacting my surgeon and getting back to me on friday about when surgery might be. ughh another surgery nono   Has anyone encountered this problem at all?? I'm just glad they might have an answer as to why I'm constipated again this soon after taking my colon out.

Prays all around

Posted 6/24/2010 12:44 AM (GMT 0)
Jacoby, yes I will be praying for you...and I am glad too that they found something that may be the issue!!! I cant believe you have been on Amitza. Wouldnt that just make you more bloated? It would just fill you up with fluids until it pushed everything through?!?! I am so sorry you are going through this, but hopefully they will be able to fix it. Even though you have to go through another surgery, if this fixes it for good - it will be a success story! Good luck to you!!!

Rosemary, oooh good, I am glad to know that they will definitely take out the excess fluids! I have been going and now it is yellow and still going, but done with all 4 liters! So happy. But I am hungry...ha ha ha....no food :( Not for a while I guess.... Ill dream about pizza and beer tonight. Yum!
Posted 6/24/2010 12:49 AM (GMT 0)
I ALWAYS have worried about the prep. I have definitely been in your boat about not going for several days and then having to take the prep. It'll flush it out. I usually start my prep around 3-4PM because it takes me so long for things to get moving. I want at least a few hours of sleep!

I'm super nauseous tonight. I applied canker sore swabs to my open hemorrhoid wound (ewww) so help numb it so I could attempt going to the bathroom. Worked somewhat but I've been constipated too long and I need to spend a few more hours in the bathroom.

What hospital are you at Tracy? Glad to hear you made it through OK.
Posted 6/24/2010 12:51 AM (GMT 0)
Snuggs, I started about 1:30 today and just finished around 5:30ish....I am going yellow now, so it has cleaned most of me out...and I am amazaed, the last time I took it later in the night and it didnt work so well. Now, I m not so nervous, but just hope for a good and successful surgery tomorrow. Crazy life experience about to unfold!

Ready for a shower now!
Posted 6/24/2010 1:01 AM (GMT 0)
     Tracy....so glad to hear you are ok.  I was sick on Sunday, something gave me terrible diarrhea, so I didn't call you, but I was thinking about you and praying for you too.  Sounds like a pretty rough ordeal you went through.  I am SOOOOO nervous.  Tomorrow I go for the pre-op testing and meet with the ostomy nurse.  Would you believe NO ONE from the surgeon's office every contacted me!!!  If I hadn't phoned last Friday I wouldn't even have known not to taper the prednisone below 20 mgm!!!  They didn't even phone to confirm my appointments for tomorrow.  'What gives with that?  Makes me kinda have second thoughts here.  Meanwhile, except for the diarrhea on Sunday, which was most likely due to something I ate on Saturday, I have been feeling fine.
Posted 6/24/2010 1:33 AM (GMT 0)
Wow Chris, I see your point. Good luck with this.

Jacoby, you are lucky they discovered the bend so quickly and are going to deal with it. Good luck.

Night prayers to everyone especially Tracy. Rosemary
Posted 6/24/2010 1:45 AM (GMT 0)
Sorry ladies but I'm way behind. I didn't have internet all day so will catch up later. Barb - I wanted to "see" you before you logged off tonight. How are you doing emotionally? Bless your heart, that prep is just awful.

It's good to see you hear Amanda. Thanks for checking in - been wondering about you. I'll be praying that corrective surgery can be done soon.

Rosemary - Good grief! That had to be a traumatic experience for you. I cry when I'm driving and hit a bird or squirrel. So glad that you weren't hurt. Your car wasn't damaged at all?

Tracy! It's good to see you! So sorry that you felt terrible today and will be praying for you.

Have to catch up more later.


Val
Posted 6/24/2010 1:49 AM (GMT 0)
Hi Val, Thanks, nope car fine too. Was lucky. I love wild life too, but it went as it went. Thanks, Rosemary
Posted 6/24/2010 2:13 AM (GMT 0)
Hi Val,

I am here and in good spirits. I have the small spirts of worry, but I think all should go well.
I am done with the prep thank goodness, and last time was yellow, so I think most of if it out of my system. My tummy is bloated however and very very squishy...lol I guess it is to be expected. Same goes for, I am really hungry right now and I am a little light headed....but all is well. I am excited and ready.
Check in is at 10:45am tomorrow, so I should be going under sometime after that. I hear usually much later for all the prep work, and possible push backs from other emergency surgeries.

I am doing good. :) So far....I hope it lasts!
Posted 6/24/2010 2:40 AM (GMT 0)
Barb - Where are you located? Or maybe I should ask what hospital you are going to. I'm really glad that you are in good spirits. Lots of prayers for you tonight and tomorrow.
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