TOTAL COLECTOMY PART 25

Christy,

How long ago was your surgery? It's so strange how it truly is one day at a time. Yesterday I came home from work and used an enema, and then ate very little last night. I always take metamucil at night and it usually helps a little come out, but at least it's a little formed with metamucil. I go a little after I take the metamucil, and a little in the morning, but I'm not empty at all....then I drink my iced coffee drink and I empty out pretty well. Today I went after the coffee drink and about an hour ago ate a chicken sandwich and a couple cookies....and so far nothing. I'll see how long it takes to go without taking something (prune juice or enema). I don't have to work tomorrow so I can experiement a little!

I haven't taken Miralax yet...how much to you take and how long does it take to work? It never worked before surgery, but then neither did prune juice, so maybe it will work now.

Hodaya,
Glad you're still pooping! I really think it's going to be a life long issue, at least to a point. I get tired of worrying about it, too. I know exactly how you feel!

Lizzie,
I totally understand why you would be nervous and scared. You've been through so much and been disappointed so many times that it's only natural to worry. I truly hope this is your final operation and all your problems will be over!

Jenise and Jen,

Please don't let any problems some of us are having scare you. Life is better without a colon. There ARE times I wonder what the heck I was thinking, but then I take prune juice or an enema and I'm cleaned out. I could NEVER do that before and it truly was hell trying to have a BM. This really is much much better, even with problems!

Hi to everyone else!

Janie

ohhh... I just got my surgery papers in the mail! Of course they scheduled my pre-op with the hospital on a day I will be on our cruise.. so I need to change that. Now.. the big surprise is NO BOWEL PREP!? They just have me on a clear liquid diet the day before. I am so surprised by this, but I do think I read something online that it is not needed!?????

Jenise, I had to do a bowl prep.  I was to start the day before surgery, but knew I would never empty out in time so I started 2 days before.  It had been over a week since I had gone so I was ready to go.  I have to say again that having this surgery has given me my life back.  I don't miss my colon one bit.  This is the best I have felt in years.

Conmarjo

Hey ya all!! So I called the doctor about my pain and I have to go on clear liquids and see if this helps. He said by bowels are probably just getting over worked and that they need a break. Has anyone ever heard of this? I started today, but I am so hungry I ate some cereal for dinner. So I guess we will see.

Hodaya-I am a dental assistant, so my patients hear everything that my gut does. Some pts laugh and others just try to ignore it. But it is so loud its embarrassing. Oh well, what do ya do?

I am so exhausted tonite. Worked all day then came home and mowed my lawn for an hour and a half. I am hoping to go camping this weekend for the last time. This summer just flew by because of the surgery and me not being able to get out.

Hope everyone is doing dandy!!
Marisa

Hi guys my name is Mary had a subtotal cholectomy in may 2006.  had a major infection in surgical site had to be reopened while still in the hospital. took 4 months for my stomache to close.   I have had problems with food since.  Never been able to progress past soft foods.   right now i am waiting for hubby to get home to take me to emergency dept .  Physician thinks I have a blockage.    I don't want anyone new reading this and getting discouraged because if I had it all to do again I would have the surgery.  I went from bowel movements once every 14 days to several loose a day.  My life is alot better.  I'm not sick and in pain all the time like I was.  They think my blockage is caused by adhesions (scar tissue).  I will let everyone know what they say.

Hey all I am home. I had some hard stool lodged just above the rectum. They were able to remove it with large volume of water (enema). I feel better but my insides still feel like some beat it up. One thing for everyone to think about is if you start loosing alot of water through your bowels you are also dumping potassium. If you notice that happening please get your physician to check your potassium level. I never had a issue with potassium until this surgery. If any of you are not real famailiar with what potassium does it is for your electrical current for heart and other organs. It could cause heart problems.

Jenise- to clear up a misconcept a sub-total can either be a partial resection or the the removal of the whole large colon. Mine was called a sub-total cholectomy and the entire large colon was removed and the small attached to the rectum. sub total and total cholectomy are basically the same and used either way depending on the physician. If you do a search on total and subtotal they both have the same definition. How much of the colon depends on the condition of the colon. Some people have this procedure done because of polyps other have it done for slow or no motility. In a case of polyps they only remove the bad section.

Jen- everyone has to go through bowel prep. Surgery can not be done with a full colon. If the feces leaks out during surgery it can mean a bad infection. every doctor has you do something different. my prep started a week before surgery. I had three days of broth, jello, and puddings it helps to water down your stools. then I had 3 days of ducolax and enemas with this I was only allowed clear liquids, then the day before liquid laxatives just to sort of cleanse the colon.

I'm not sure what everybody's surgeon's are telling everyone on diet wise my surgeon told me i am not allowed to have any chucks of meat anymore like roast, steak and I am not allowed to have any seed items like nuts, corn, green beans because they do not digest. they can cause an outcropping in the colon that can lead to blockages. one of the easiest meats to digest is chicken and fish. he also told me to watch my stool if something comes out undigested stay away from it. he said it is your body's way of telling you what it can handle and what it can't handle. I was also told I should never have a formed stooled that I should have stool the consistancy of a babys stool.

Marissa- Your not going crazy with your tummy growling and making noise. Mine did too and still does 3 years later. I did ask about it and was told that some peoples small colon does that as it contracts to take stool down. It is just a fact of life that we will have to deal with. In the beginning it is embarrassing but eventually it won't bother you as much. I will take the noisy belly over not being able to poop anyday.

Everybody stay possitive as you heal and as you put years behind your surgery you do feel better. I am 3 years out and am still happy and pooping. I'm amazed to hear that people only poop once or twice aday after this surgery because I still poop 8 to 10 times aday.

Mary, glad you're home and feeling better! Thanks for clearing up my misconception of a sub-total colectomy! After searching a bit more, you are 100% correct - now I know why I didn't find the difference between the 2! My surgeon said I was having a sub-total, but he is not removing the entire colon - but now I see that it involves part or all of the colon. Again, thanks for clearing this up, I read it before and thought for sure they (and you ) were wrong! Again, it is very encouraging to hear you don't regret your surgery - even though you have faced some big hurdles!

Regarding the bowel prep - I DO NOT have to have one! I am very surprised, but my surgeon no longer does the bowel cleaning prep.. and according to new research - it's a debatable topic - but studies have shown there are no advantages. I don't get it because I have always heard about leaking stool and bad infections... then again, they may surprise me and do it at the hospital? Anyway, I just have to be on clear liquid the day before.

Pitz, best wishes as you head back to your doctor in November. I hope everything works out for your reversal!

Hi Everyone,

Hope you are all doing well!  Sorry I haven't had time to write but I've been super busy at school; I usually get there at 6:30 am and don't leave before 6:30 or 7:00 at night then have dinner & do paperwork until 10:30 or 11.  It's a long day but I really love my class and love being back at school:)  I have decided that I need to start making myself go home by 5 everyday so that is my goal this week.  I have 24 kids in my class which is a LOT as we have always had between 16 to 18 so they decided to drop on of our teachers then we had a huge influx of kids move into the district but they never added another teacher back to us.  I also have all of the classified children and a few behavioral children but I asked for them because I brought my last years class with me and they were such a great class that I knew they would be awesome role models for other children :) and I couldn't face another person being their teacher if I was going to be moving up a grade.

I had my stent surgery yesterday and have some good and not so good news; first, the ureter surgery he did this summer was a success and is working very well, YAY!!!!! Now the not so good news,  the problem is my kidney and once again my body is not the norm.  My dr said it's a very complicated case and I told him he doesn't know how many times I have heard this.  I've actually had 3 drs ask me if I wold be willing to donate my body to science when I die, I said I never thought about it but maybe I should.  Anyway, there is a tube in my kidney that's formed incorrectly.  I actually had a urologist tell me I had a deformed tube in there 11 yrs ago and that there wasn't anyway to fix it and I'd eventually have to have the kidney removed but I put it out of my mind because I didn't have anymore stones until 5 yrs later and this dr retired and I had different drs who kept telling me I had hydronephrosis (build up of urine) because I didn't drink enough even though I told them I drank at least a gallon of water a day.

So my new dr says that there isn't a way that he knows how to fix it but he put a stent way up into the kidney to see if it would help with drainage and with the pain and if it does he will change it every three months as planned and research till he can find a way to help me.  He said that if the pain doesn't go away that it may be scar tissue around the kidney but already I am urinating almost hourly so that's a good sign.

My husband is so stressed over all of this and is so sad because I'm going through it but I keep assuring him it's to help our relationship grow (as it has in so many ways) and just the day before my surgery I told him that my dr needs to learn something new and my body is going to help him.  I had no idea at the time why I said it but now I know why; I'm very confident that God led me to him because he is the one who will find a way to fix the tube and go on to help others with the same problem in the future.

While I was in the holding tank waiting for surgery, I saw my colon surgeon; he stopped by to see me.  I seriously don't know how he remembers me because he's in a practice by himself and he has thousands of patients; he does surgery 3 days a week from 1 pm until late at night then all day Thurs & Fri. into the late evening.  He never finished mine until 10:00 at night and he always comes to see you everyday in the hospital at 5:30 in the morning; he's beyond amazing!!!!!! He asked all about why I was there again and how my bowels were, I told him to go home, he just smiled and said he had 3 more to do & it was 5:00; he's a super machine.  That's why I will never go to anyone else (he's a general surgeon).

Time is getting close for a lot of you, especially you Lizzie; I pray for you every day and can't wait for you to feel better. Alwaysknow I'm thinking of you and I love you.

Jen & Jenise- I know it's easy for us to say to relax but do try to.  As everyone has said on here, it's the best thing they have ever done even if they did have complications and not all us had any.  Biggest advice: ALWAYS use prep H wipes and use A&D ointment at least for the first six months and MOST IMPORTANT***STAY on the low residue diet, even if your dr tells you that it's ok to stop after 6 wks.  Many of the people on here's dr told them they could eat what their body could tolerate and most of them have had some kind of complication.  Keep your spirits up and know that I'm praying for a successful surgery for you both as well as a quick recovery. Much love to you both:)

Janie, Christy, Hodaya, Marisa- I hope you are all doing well and know that your in my prayers.

Love and hugs,

JUDY

Hodaya-  If/ no when I can pull all of this convention thing together, it won't be for at least 2 summers from now so plan on visiting your sister, she lives in the US doesn't she?  We will chip in for airfair if need be and if I have it where I'm thinking, you can stay at my friends house for free:)

As for your scar issues, it takes months for it to return to normal and it doesn't matter which surgery you have.  It will be numb, bumpy and painful; it's from the cutting through the abdominal wall and it's where scar tissue has built up.  It will go away but it takes a LONG time.  I'm so glad you are feeling better:)  I went back to work full-time after 6 weeks and I had an open surgery but I was really tired for months afterward; it actually took almost 9 months until I felt my strength back and my body was ready to exercise.  Just take it easy when you go back to work and come home and rest. Please don't overdo cause it  will cause slow healing.

LOVE YOU,

Judy

 

Hi, how is everyone? Doing pretty good here. Just so flippin tired!! Seems like I never any energy anymore. Its almost like the diseases that we all are living with is just plain exhausting!! Plus work has been super busy and after nine hours of that I am just drained. Just stayed home this weekend. Trying to get everything wrapped up with the painting of our house.

So I tried the liquid diet, but I was so starving I couldnt handle it. You can only eat so much jello plus it brings back memories of that dredded hospital. Maybe just a real soft diet would be ok. I do stay away from most meats other that chicken. My gut still makes that crazy sound though. People can hear it from across the room. And it can get very painful.

I cant believe summer is coming to an end. It seems like I didnt get much since I was down in the first of June for surgery. Pretty soon, we will be getting a crap load of snow.

Well, hope everyone is good. Just a bit gloomy here today. I guess we all get that way. The good thing is that we have each other. Cuz, no one knows best than we do what we deal with daily.

Jenise - Thanks. I hope so, too!

Christy - I failed all meds. Was on Prednisone for over two years and every time they'd try to wean me off, I flared at the lowest doses. Had a colonoscopy in May and it showed severe disease, but no displasia on the biopsies. I hemorrhaged the night of my last Remi infusion, landed in the hospital with a 5.3 hemoglobin, and the rest is history. The hematologist said it was a life-threatening blood loss, which scared the heck out of me. I was just tired of being sick all the time! I'm hoping for a reversal, too. I don't wanna wonder years down the road "What if?" I have to try if it's possible.

Conmarjo - I had my surgery in June. I feel like I've got most of my energy back, but am sometimes still wiped out. I get together once a week or so and bead with some friends and even just sitting there for a few hours, I come home and I'm really tired. And I'm not even working right now, either. I can't imagine what it'll be like when I have to be on the go all day. I have Ambien and I've started taking it again after the hospital, but not often 'cause I don't want to be so asleep that I wake up to a leaking bag. I've started to avoid eating anything too late so I don't have to get up more than once. The WOC nurse gave me one of those hospital bed pads so if my bag does leak, at least I won't have to change the sheets. I think I've settled into a good routine, though, 'cause it hasn't leaked now in over a month.