Total Colectomy Part 7

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Somer
Regular Member


Date Joined Mar 2005
Total Posts : 104
   Posted 11/2/2005 2:27 PM (GMT -6)   
Haven't posted in awhile!  I'm sooo glad everyone continues to do well.  Cathy, gosh, your story is inspiring!  You are so strong to have gone through what you have and still seem to be upbeat!  I hope your reconnection goes as planned! 
 
I've been doing ok, just have a bout of diarrhea for the past 1.5 weeks.  Not really sure if it's just a bug or if I'm having a problem!  I think i'll try to wait it out and see. 
 
Emma, congratulations on school.  I think you'd make a fine NP.  Good Luck!
 
CCG, hope your sugery goes well.  I think most of us would say the surgery was WELL worth all of the recovery.  Good Luck!
 
Amira, glad thinks are going well for you also!
 
~Somer

KellyIA
Regular Member


Date Joined Aug 2005
Total Posts : 67
   Posted 11/2/2005 6:58 PM (GMT -6)   

Has anyone heard from Kelly lately......... Here I am. 

I have gone back to my rotating 12 hour days.  I have accepted a new position that will be 5/8 hour days, no weekends, freedom to go poo when I need to no need to take the 2 way radio in with me. BUT.............. I think tons more stress.  Like I did not have any before.  The compensations one has to make. I will be doing both jobs for awhile, no time off.

Things have been going good.  I was told by my surgeon not to look in the stool anymore to analyze what is coming out.  Not to strain (could blow a gasket) and just go with it.  I am now taking a Zelnorm when I feel extra full.  WOW, does it work and now.  It makes everything watery though.  Kinda like the feeling you get when you take sodium biscodyl.  Also, the apple a day seems to help too.  I even woke up in the night to go.  I am still trying to manage my weight.  Even though your missing part of your guts, the chocolate still goes to the hips and butt.

Glad to read everyone is doing good.  Wish I could be on here more.  If anyone wants to chat in person, see the TCC sheet for my phone.  Here is my e-mail  clayknob@interl.net.

Take care,

Kelly


ZoeS
Regular Member


Date Joined May 2005
Total Posts : 84
   Posted 11/3/2005 8:56 AM (GMT -6)   

Hi Everyone,

That was interesting about hair falling out.  That's been happening to me ever since the surgery.  Thank God I have very thick, coarse hair so it isn't really noticable but it is creepy when you wash your hair and get a handful of it.  I have been trying to let my hair grow, so I am resistant to cutting it.  What causes that you nusrses and doctors out there.

I have been doing okay.  I still can't eat a lot of stuff and never put the weight back on I lost.  My doctor told me some people just don't.  I've always had a very sensitive stomach and never really did eat a lot of spicy foods.  I've be kind of depressed lately too, so that is a real appetite killer for me.

Cathy, I am so happy you are on the road to recovery.  You have had one heck of a time.  You are always in my prayers.

Love

Zoe


Cathy W
Regular Member


Date Joined Aug 2005
Total Posts : 218
   Posted 11/3/2005 12:20 PM (GMT -6)   
Wow,
We haven't heard from you guys in a while. I'm glad to hear that you all are doing reasonable well.

I still get winded if I go up the stairs. I am very jealous. I want to be all better already! I see my PCP today for the 1st time since surgery. Boy will he be surprised at all that happened. They are always running late in that office, I'm not looking forward to going. I do want a cardiac referral though for my sick sinus syndrome. I don't think that the metoprolol is holding me at a good pulse rate. I'm still too fast.

We're going to try steak this weekend. It's my son's birthday and we're going to a Tempan yaki Japanese restaurant. Should be okay.? I always skip the bean sprouts. Most importantly, my daughter is driving up for the dinner, so I will get to see her, even if it is just for a little while. It's homecoming at the university so she wants to be there for the festivities.

I'm going out to lunch today, my choice of restaurant. I'm at a loss. I don't really have an itch for anything (well not that my in-laws would eat.) What a dilemma.

Gotta run.
Love to all,
Cathy

cheryl1990
Regular Member


Date Joined Apr 2005
Total Posts : 32
   Posted 11/4/2005 8:06 AM (GMT -6)   
Sorry I have not posted in a while.  I am finally back to work today for a 1/2 day.  Everything went pretty well in the hospital.  I was in for 6 days.  I am going to the bathroom constently though.  My doctor wants me to take fiber and I am kind of scared because of the gas build-up. Does anyone else take fiber on a daily basis?  Also I was told to take immodium and don't know if I am suppose to take it everyday or not, although it does not stop things it just slows them a bit.

Suzy2
Regular Member


Date Joined Aug 2003
Total Posts : 335
   Posted 11/4/2005 9:19 AM (GMT -6)   
For Cheryl 1990

Psyllium Husk is a good source of fibre if you don't want to go down the usuel wheat fibre route. It's very
gentle on the intestines so maybe you might not get so much gas. It's worth a try if your Doctor gives the ok.

Sue


cheryl1990
Regular Member


Date Joined Apr 2005
Total Posts : 32
   Posted 11/4/2005 9:56 AM (GMT -6)   
He wants me to take benefiber daily.

Cathy W
Regular Member


Date Joined Aug 2005
Total Posts : 218
   Posted 11/7/2005 11:52 AM (GMT -6)   
Cheryl- they don't want you to get dehydrated and the fiber or imodium will help with water reabsorption. My doctor suggested imodium before each meal and at bedtime. That seemed excessive to me and I haven't taken any but that was her recommendation. She also was pushing thickening foods like bananas, peanut butter, apple sauce, crackers, etc. Hope that helps.

I ate salad last night. It's pretty gross coming out. My hair is still falling out, my skin is real dry, my hands are finally done peeling, my lips are still chapped, and my tongue is almost back to normal (which helps my appetite.) My back pain and spasms are better but I'm still having trouble sleeping. I took Lunesta (sample) and it gave me a metal taste in my mouth- yuk! That's not gonna fly! Now I have a script for restaril.

I still fatigue really easy. I can't imagine having the stamina needed to go back to work all day. I feel guilty sitting at home all day while my husband is busting his butt at our clinic all day. I'll get over it though. I am cooking dinner most of the time now. It makes me feel like I'm doing something. I'm soooo bored. This week I'm busy with appts. I see the cardiologist Wed. and the surgeon on Thurs. Lab on Tues. and an appt for my son today. I'm driving now- with my seatbelt!!

Gotta run for now-
Cathy

Emmaleigh
Regular Member


Date Joined Jun 2005
Total Posts : 183
   Posted 11/7/2005 7:06 PM (GMT -6)   

Cathy - Good to hear that you are doing well (and wearing your seat belt).  Your a brave girl to try some salad, I still find that high fiber foods are really giving me alot of cramping so no reason.  Have fun with all of those f/u appointments.  I have heard alot of complaints from patients about the Lunesta and the metallic taste as well as it not working as well as Ambien.  Be careful with the temazepam, although it will work well for you while you are off of work, it is very habit forming and will also have a nasty hang over effect... but then again right now you dont have too much to worry about getting up for... so its ok!

Grad school is horrid!!  I am soo busy I can hardly stand it... and of course just when my classes are getting busier... so are my students classes getting harder and thus they need more of my time... its like a viscious cycle.  I just stick to my mantra... ONLY FIVE more weeks LEFT!

My birthday is in 4 days, and I am taking a WHOLE 1 1/2 days and going out of town... away from homework, students, and everything else.. I cant wait!

Hugs,

Emma


Cathy W
Regular Member


Date Joined Aug 2005
Total Posts : 218
   Posted 11/8/2005 11:02 AM (GMT -6)   

Hey Emma-  Out of town sounds real good about now!  Happy Birthday too!  I'd say that your plate is full.

The salad didn't work for me, I don't think I'll do that very often.  Hot dogs and beans didn't work either.  French fries are bulk forming for me, but smell bad.  I'm learning how different things work for me or not.  Because I have to empty the ileostomy pouch, I have to see everything- yuk!  It's been hard to get used to that!  But most importantly, everything works inside.  My transit time is very quick.  No constipation here!  No Imodium, Miralax, or fiber.  Just my HTN/Tachy medicine, and the Lexapro for depression, and occasionally something to help me sleep.  I was taking way more crap before surgery.

Today marks 2 months since the 1st surgery.  1 1/2 months since the 2nd.  I'm half way to the 3 months recoop mark for reconnection.  After the new year I should be ready physically.  Really, I'm scared to death of another surgery, after so many problems last go round.

My hands are done peeling, but now my face, arms and the souls of my feet are peeling.  What else?

I'm off to go buy some vitamins and get my blood drawn- eek! confused
Talk to you all later,
Cathy

ZoeS
Regular Member


Date Joined May 2005
Total Posts : 84
   Posted 11/8/2005 4:08 PM (GMT -6)   
Just got out of the hospital today.  Everything was going well and Friday I started throwing up and had terrible abdominal pains.  The doctor told me to go to the emergency room and they admitted me.  Had an NG tube put down again.  I'm surprised you guys didn't hear me screaming where you live.  I was so afraid I was going to have to have surgery, but everything worked out.  He said my diet was okay - just happens sometimes.  I couldn't believe the gunk they got out of me. Bummer.  I feel okay now, but I was in the hospial over my birthday.  Hopefully this coming friday we'll celebrate.  I think I'll have a baked potato without the skins.  I'm just happy to be home.
Love
Zoe

Cathy W
Regular Member


Date Joined Aug 2005
Total Posts : 218
   Posted 11/8/2005 5:12 PM (GMT -6)   
Zoe- I'm soooo sorry to hear you've been sick. NG tubes are noooo fun. I had 5 while I was in the hosp. I was altered (disoriented) and kept pulling them out, which meant they had to put them back in. I too, screamed pretty loud. Hopefully you can make up for your birthday Friday. Thurs. is my anniversary and Fri. is my husband's b'day. We're going to see the Eagles concert Fri. night. I hope my energy lasts. Did they give you any idea why your gut shut down? That's scary! I really feel for you. Were there any warning signs that we can all look for besides the pain and vomiting? When I had the ileus after surgery I threw up so much bile that the big pink tub overflowed. I got the NG tube too.

I sure hope you stay healthy and have a great late b'day celebration.

Love to all,
Cathy

ZoeS
Regular Member


Date Joined May 2005
Total Posts : 84
   Posted 11/8/2005 10:26 PM (GMT -6)   

Thanks Cathy, No, there were no signs.  I felt fine one day, thought I was eating right and was sick the next.  At first I thought I had the flu, but my abdomen hurt so much I knew something else was wrong.  The dietetion I spoke with mentioned that sometimes chocholate (bo ho) can cause problems and the only other thing I ate that I normally don't was olives at a Halloween party.  Well, I'm following the new diet to the measure.  My husband and I went out and bought a food processor today and i even got some baby food.  Even with all the problems, I'm still glad I had the surgery.  Thanks for the well wishes.  We're going out again on Friday.  I think i'll stick sick with fettuccine alfredo  have  few bites and take the rest home.  Happy anniversary to you too. Enjoy the Eagles concert.  I love those guys.

Well wishes to all,

Zoe


Cathy W
Regular Member


Date Joined Aug 2005
Total Posts : 218
   Posted 11/10/2005 3:30 PM (GMT -6)   
Where is everyone? You guys can't bail on me now, I'm not healthy yet.

I was cleared yesterday by cardiology and today I saw the surgeon. My labs continue to improve. WBC's are finally normal. Platelets are down to 480K. Liver enzymes are still elevated though. She's cleared me until Jan. and wants to wait until 1st or 2nd week of Feb. for reconnection surgery. She thinks 3 months from now is better since my labs are just getting back to normal. She said my peritinitis was quite bad- duh!

My ribs hurt when I yawn, cough, or sneeze. My abdomen doesn't hurt. I don't understand the pain in my ribs. I had fluid in my lungs in the hosp. but I'm not rattling anymore when I get winded like before. I also get pain in my right hip when I've done too much. I don't know if it's the large muscle that wasn't used for 6 weeks or if it's something else. Anyone have any ideas?

Todays my anniversary. We got "together" for the 1st time this morning. I was rather fearful of the unknown. If I play my cards right, I might get dinner out of the whole thing. We've got the Eagles concert tomorrow night. I hope I don't have any problems, like having to walk too far or too many stairs. My legs aren't what they used to be, that's for sure.

My best to everyone, and hope to hear from ya'll soon.
Love
Cathy

ZoeS
Regular Member


Date Joined May 2005
Total Posts : 84
   Posted 11/11/2005 6:58 AM (GMT -6)   

Hi Cathy,

We're lurking out here.  Glad to hear about you and your hubby getting "togehter".  The first time my husband and I tried it I was so nervous, I felt like a virgin.  I'm doing better.  I am so afraid to eat anything.  I've been existing on cream of wheat, jello, applesauce yadda yadda yadda.  The thought of having another NG tube scares the hell out of me.

I just wish there was somethng I could do about my hair.  Halloween is over, so the witch look is out.  My hair is so dry and brittle.  Are there any vitamin supplements I could take?

Love to all!

Zoe


saramarie
Regular Member


Date Joined Mar 2005
Total Posts : 75
   Posted 11/11/2005 11:42 AM (GMT -6)   
Hi Cathy--You are so inspiring on one brave lady! I am so happy happy to hear that you are going out and getting together :) and able to eat so many different foods. It seems like you are recovering remarkably fast.

Zoe I am so sorry to to hear you had ileus that really sucks--you poor thing with that awful NG tube...I don't blame you for being afraid to eat. You said a while ago that you were having problems with a lot of foods still.....I am the same way totally afraid of food. Did the doc say it was ileus or a blockage?
If you don't mind me asking what kind of problems do you have with foods......My prob is foods that I think should shoot right through me just get stuck for a while or just don't want to move through at all. Do you have the same problem? Or do fibrous foods move through you too fast?
I'm just getting a bit depressed b/c even the fibers in applesause cause major problems. I need a new doc...My GI doesn't want to do anything yet......he thinks I should give it a year. I know you said you can't keep on weight and I gained some after surgery drinking tonds of ensure but now just keep losing weight....hmph.
sorry to babble on and on.....just curious if anyone is having the same problems eating.

But on to more fun things--I have spent a small fortune trying to figure out my hair and what to do with it....the best thing i've found is actually the Pantene Treatment.. It's called Deep moisturizing treatment Frizz Down......the girl who does my hair said to use it only once a week or it actually makes hair worse...weird. But I've used it for a couple weeks and my hair actually has some shine and life to it...it's still falling out tho, but at least it's looking a bit healthier. I know everyone's hair reacts to different products, I just spent tons of money that I don't have, on expensive stuff that didn't work, and this seems to be helping. Had you doc checked your iron levels?

well, I'm off to drink some yummy barium for a CT scan.

Zoe I am glad you are home.....

Cathy we'll be here for ya....for the reconnect surgery too :)

Emma--hope you had a great couple of days off!! Did you talk to your doc about going to the bathroom only once every 3 days?
sara

ZoeS
Regular Member


Date Joined May 2005
Total Posts : 84
   Posted 11/12/2005 5:55 AM (GMT -6)   

Hi Sara and all!

You sound just like me.  Food I think should shoot through plugs and visa versa.  We went out for my birthday last night to this really great Italian restaurant and all I ate was soup and I still felt sick because it was highly spiced.  If I look at another bottle of Boost I think I'll puke LOL. 

I had a blockage in several places.  The doctor showed me the xrays.  There were five or six large dark spots that weren't allowing food to pass.  He said a lot of it had to do with scar tissue and it should clear up as I heal more.

Thanks for the hair tip.  I'll get some of that today. 

Love to all

Zoe


Cathy W
Regular Member


Date Joined Aug 2005
Total Posts : 218
   Posted 11/12/2005 11:59 AM (GMT -6)   
Thanks Sara and Zoe, I don't know what I would do without all of you guys. Really, I don't have anyone that I can talk to about this stuff. They just don't understand, I guess they can't really. Unless you've been there, you can't possibly understand.

My hair is still falling out by the handful too. I cut it short so that the hair falling out would be shorter (I had really long hair) BOO HOO. I get tired of hair everywhere, like my bed, the shower, my shirts, etc. I even stopped up the shower drain (before I cut my hair off). My hair is dry too but I'm a little grateful for that, every since my last child was born my hair has been more oily.

Food wise, I'm only able to eat almost everything because of the ileostomy. I have controlled emptying, if you know what I mean. Somethings produce more gas than others (i.e. hot dogs and beans- I won't be doing that again!), and some foods come out looking the same as when they went in (i.e. corn). Salad is just gross coming out. I haven't had any sluggishness or things getting stuck, thank goodness. I don't even get gas pains. What I do get is the gurggles when I lay down and sometimes I can feel things passing through the stoma which grosses me out a little. I wonder about anal bowel control when I get reconnected after months of no use.

The Eagles concert was great. One of our patients has a luxury box at the arena. He gave my husband the tickets (free). There was food and soda (which I still can't drink) and the best view. One could get used to that style very easy. Private entrance, reserved parking, private elevator, room service. What's not to like? Had we been on the floor of the arena, I would have been miserable because everyone was standing the whole time down there. They played for 3 hours. We got home at 11:30- my bedtime is closer to 9. Then I woke up at 5:30 again. Still having trouble with the sleeping thing.

Zoe- they were pushing Ensure on me, and I feel like puking when I see it too.

I can't put into words how much this forum has helped me, ladies. It's a safe place to vent and whine and complain. But it's so much more than that! It's reasurring and rewarding and a place where I worry about other people and not just my problems all the time. It's also very informative. I consider all of you guys my friends and love and care for each and everyone of you.
Thanks for all that you are to me.

Cathy

ZoeS
Regular Member


Date Joined May 2005
Total Posts : 84
   Posted 11/13/2005 9:51 AM (GMT -6)   

Hi Cathy et. all.,

Tummy gurgles are good my doctor told me.  Once, when I was at work I was talking with my boss in his office and my stomach made the loudest sound I ever heard.  He just looked at me, I looked at him and we started laughing.  I told him that meant I was getting better.  When they stop, that's when you have to worry.  When I was in the hospital last week they kept listening to my abdomen trying to hear something.  They said it was way too quiet in there - not good.

I am dreading Thanksgiving.  My husband's family are all BIG eaters.  There is so much food there that I can't eat and they don't really understand why.  I'm thinking of bringing my own tomato soup and jello, really I am.  I don't want to get that NG tube again.  I think that was worse than giving birth.

Well, got to do laundry and see my girlfriend this afternoon.  After 25 years of marriage her husband served her with divorce papers.  She's devestated.  Keep her in your prayers.  Her name is Sharon.

Love to all

Zoe


Cathy W
Regular Member


Date Joined Aug 2005
Total Posts : 218
   Posted 11/14/2005 2:17 PM (GMT -6)   
Zoe- bring whatever makes you feel good. At least take it in order to have a back up plan in case you don't find anything you can eat. They'll understand. If not, too bad.

I saw a little girl about 2yrs old at the mall with an NG tube in, my heart skipped a beat and I really felt bad for her. I wouldn't wish that on anyone.

Gotta run- it's nap time.
CAthy

Ccg
New Member


Date Joined Oct 2005
Total Posts : 6
   Posted 11/16/2005 8:08 PM (GMT -6)   
Connie here I spent 6 days in the hospital.
they say my fibromyalgia is really going to slow me down.
 
I fainted leaving the hospital. it was awful
 
2 questions
 
 
when I go the bathroom it is just black liquid. Is this normal?
 
 
Did any of you have a drainage tube. There was ab out 9 inches in me and it hurt like hell when she pulled it out. She stopped half way because it got stuck.
 
Did any of you have this and was there something hooked to it at the end in your body??
 
write later i am tired
 
 
 
Connie
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

Cathy W
Regular Member


Date Joined Aug 2005
Total Posts : 218
   Posted 11/17/2005 11:00 AM (GMT -6)   

Hi Connie,

We don't really like black stool because it could be a sign of old blood.  Stool can be black because of taking iron supplements also.  You should let your doctor know so they can test it for blood.  That's called a guiac test.

I had 5 drainage tubes and I had one get stuck on the way out too.  They are not connected to anything inside.  They are used to drain fluid or abcesses.  They are usually called JP's.  I was real glad to get them out though.

We glad you're home, now you can start the recovery period.  Start slow and listen to your body.  When you're tired, sleep.  When you have energy, don't over do it.  And let other people help you.  It's time to call in those favor cards. 

I've been home for 4 weeks.  I still tire easily, but I'm feeling pretty good.  Hope this helps.  Let us know how you're doing and if you need information.

Love to all,

Cathy


mcatherine
New Member


Date Joined Aug 2005
Total Posts : 16
   Posted 11/17/2005 11:47 AM (GMT -6)   
Hi Everybody:
I've started back at work so I've been busy and haven't been able to get on the board. I'm very happy to be back at work and am suprised at how well I feel. It will be a month on the 19th. I can eat most things, I have to take it easy on salads and chocolate which is a bummer, but I really should not complain. I have some cramping and diahrea. And I have to make sure I drink plenty of water, otherwise I end up with a migraine the next day. I do get very tired by the end of the day. But for the most part I am recovering very well. Thanks everyone for being there for me.
So happy you're doing better Cathy.
Happy Birthday Emma.
Hope your doing better Zoe. sorry to hear you've had a setback. Happy Birthday to you too.

Mary

Cathy W
Regular Member


Date Joined Aug 2005
Total Posts : 218
   Posted 11/18/2005 11:37 AM (GMT -6)   
Wow Mary, back to work already. Try not to push yourself too hard. I still don't have the stamina to go back to work. I get tired after everything I do. Do you have a sit down job?

I've found that there is a fine line between not enough water and too much water. If you drink too much, you get diarrhea, not enough, you get dehydrated. Dehydration is a huge cause for migraines too.

Is anyone out there drinking soda? It doesn't settle well with me. I used to be a diet coke-aholic, now I have trouble finding things to drink. I haven't had diet coke in months. I am getting sick of ice tea all the time. Any suggestions?

Connie- I hope you continue to do well.

I hope everyone is doing well. Getting ready for the holidays- eek!
write again soon.
Cathy

Ccg
New Member


Date Joined Oct 2005
Total Posts : 6
   Posted 11/18/2005 6:39 PM (GMT -6)   
HEY GIRLS

tHANKS FOR THE WELL WISHES.
i WENT AND GOT THE 18 STAPLES OUT TODAY. HE SAID EVERYTHING LOOKED FINE.
STARTED ME ON BENIFIBER. HE SAID THE DRAINAGE TUBE GOT STUCK ON SOME OLD SCAR TISSUE IN THERE AND THAT WAS WHY IT HURT SO BAD AND GOT STUCK. THE PLACE STILL LOOKS HORRIBLE. HE SAID LET ME KNOW IF IT DOES NOT HEAL UP.
I AM STILL RUNNING A FEVER OF BETWEEN 99 AND 100 HE SAID LET ME KNOW IF IT GETS TO 101

I HAVE NOT BEEN TO THE BATHROOM TODAY AND THAT KINDA OF SCARES ME. HAVE HAD SOME GAS.

I ALSO AM HAVING THE BACK SPASMS. THEY ARE A PAIN.
IT IS SO NICE TO READ ALL YALLS STUFF SINCE IT IS REAL HARD TO TALK TO ANYBODY about THIS STUFF.

I THREW UP IN THE HOSPITAL DARK GREEN I GUESS THAT WAS NORMAL.

GOOD LUCK TO EVERYONE OUT THERE. AND HAPPY THANKSGIVING. I AM SO BLESSED MY DAUGHTER AND DAUGHTERS IN LAW ARE DOING THANKSGIVING FOR ME.

WE GAVE MY SON HIS 14TH BIRTHDAY LAST NIGHT. THEY ORDERED PIZZA AND GOT A CAKE AT PUBLIX.
MY HUSBAND ACTUALLY HAD TO GO BUY BIRTHDAY PRESENTS.

HAVE A GOOD WEEKEND

CONNIE
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