TOTAL COLECTOMY PART 24

I can't believe all that has happened in the few days I haen't been on here!  I haven't had computer access due to mine being broken and my daughter taking hers only G-- knows where.

Hodaya -YAY, YAHOO, YIPEE, It's FINALLY happening girl!!!!!!!!! I can't believe you actually got a surgery date!!!!! This is the BEST news!  Don't worry about the 10" that your surgeon is leaving, with all of the testing you have had your surgeon is able to tell exactly what part of your colon is and is not working and he obviously feels that the sigmoid is working fine. My surgeon left 2" above the rectum; and especially don't worry about the time you're having surgery; some sureons work best later in the day. My surgery was scheduled for 5:00 pm and I was scared that my dr would be tired but then my GI told me that my surgeon does his best work at night and with Diet Cherry Coke; so I bought him a case of Diet Cherry Coke  and I didn't have my surgery until 6 at night. (Though I think he drinks too much of it because he came to see me every morning at 5:30 am and when I asked him if he ever slept he said not too much; but he is an awesome surgeon) My surgery only took about 3 1/2 hours and it was an open surgery, I was in the hospital for 5 days.  I don't know if they can give you an epidural afterward but ask if that is an option, it is so much better for pain control and it doesn't cause the bowel to "sleep" as pain meds do.  I know that you will be asking more questions and we will be glad to answer them for you .  I'm just soooooo happy for you!!!!!!! !!!!!!

Lizzie - So happy to hear that you will be having your surgery soon; I know this is what you've been waiting for and you soooo deserve it after ALL you've been through!!!!!!

Jen - Can't wait to hear about your appt. Hope it went well and you have good news!!!!

Tinker - Have a wonderful time on the cruise; enjoy the sunshine!!!

Janie - I hope that things get better soon, keeping you in my thoughts and prayers.

Christy - So glad you are feeling a little better; remember just take one day at a time and you won't even realize that all of a sudden you are feeling BETTER.

As for me, I'm counting the days, 6 to go, until my stent is removed.  The spasm meds no longer work and am constantly having spasms now.  It is very uncomfortable but if it works I can put up with anything so please say a prayer that it has worked.

Hugs and love to all,

Judy

Hello, Hodaya, yes like Judy I had two inches past the rectum left. I also had an epidural for pain and it was ok. But they have never really worked for me. The pain pump was the best. I did not have a ng tube. What is that for? Ive heard of others having it but never really understood what it was.

Janie, So what does your doc think of this pooping situation? I feel the same way at times. Some days its easier to go and other its harder. Sometimes I feel like I am stressing way too much about it. I do not want to strain to go but I feel like I have to at times. I also do the grape juice and apple juice. Usually everyother day. I have not tried metamucil. Maybe I should. I dont know. I think I am obsessed with pooping. Is there a name for that???? LOL.

My surgeon called me today at work, what the flip is that about? He wants to see me tomorrow at 11:00am. I am scared. If I have to have any more surgery done or my pathology report came back not good I am going to have a nervous breakdown. I am just to the point of feeling pretty good and I do not want to go back to that dreaded hospital. I have been there twice within the last eight weeks and I dont need a third. Geez a pete!!!!

Marisa

Hodaya, i wish i had a NG tube. my dr told me to start on soft foods and i decided to eat a whole piece of cheesecake, boy was i payin for that later...lol. im so happy for you girl.... in my opinion, have him remove all of your colon, its too difficult to tell what works and what doesnt. he may say he knows what part of your colon works but you can never be sure. My doctors and my surgeon told me to remove it all because you cannot see what is dead and what isnt. Its better to take it all instead of just only a portion and then having it not work and then go back for a second surgery. they left just my rectum and im glad they took it all.

Marisa - Hope everything is okay. I will be saying an extra prayer for you.  I don't know how you can sleep tonight, I'd be so nervous; your dr should have told you what he wanted to see you about, that was so wrong of him to do that to you, make sure you tell him that.  After all I've been through these past few months with my kidney and the c diff infection, my drs call and talk to me themselves, they don't have their nurse call and when all of this is over I'm going to see the dr who caused all of my problems to tell him personally exactly what he has done and to not let it hapen to others.  We as patients can't continue to let drs treat us as peons-(sp.) we need to constantly be our own advocate and your dr should NEVER call you and tell you he needs to see you with out giving you a reason why.  Sorry for the venting but...

Hodaya - You're the BEST girl!!!!! You ALWAYS make ME and everyone feel so good!!!!!!!!!  I'm just sooooooo excited for you !  My NG tube was only in for a day; well almost 2 because the staff didn't follow my dr's orders so he took it out the next morning, but I didn't have it in until I had a bm. Now think about this: I didn't get to my room until 1 in the morning and he came at 5:30 in the morning and that's when he originally wanted it taken out but they didn't so when he came at 5:30  the next morning that's when he pulled it out.  Then that night he ordered either MOM or an enema to get things started , it was my choice, I chose the MOM and that's all it took, the rest is history:)  My surgeon doesn't do a pain pump  due to it making the bowel "sleep", that's why he does the epidural, then when that comes out you take pills.  After all he has done for me, I'd get him a lifetime supply of Diet Cherry Coke . I told my family that if they ever have to have any type of surgery, he's doing it, they just have to suffer until we get there; hopefully they don't have a gall bladder attack or something. (He's a general surgeon but has been names one of the Nation's Top Surgeon's).

As for the stent meds, I just am going to tough it out; some things you just tolerate, you know how it is.  It isn't too much longer and it will hopefully be over. YAY.

Alright I really need to go to bed, it's 12:30 and I'm watching Discovery Health-Yeah I'm addicted to it, I love to figure out what is wrong; maybe I am in the wrong profession, not really; I started tutoring this little boy in reading last week and my husband said you really love what you do don't you, I said why, he said because your beaming . So, yes I'm in the right profession.

Peace and prayers,

Judy

Marisa - I am like the others, I think your doctor should have told you what this visit was about. Are you married, I know I would want my husband or a friend with me. Let us know asap! I am four weeks out from surgery and three weeks out from my second (emergency surgery due to suspected leak at the site of the anastamosis). How far out are you? I am still suffering every time i eat. I can't find anything that doesn't nauseate me or cramp me. Even potatoes and rice hurt me. Before the surgery, I had not been able to handle any carbs for two years. They would swell horribly in my stomach and cause terrible pain. What do you eat?

I am going back to Birmingham today (five hours drive) and my appointment in tomorrow for my checkup.

Thanks for the info on Biofeedback. My doctor mentioned that before surgery but she didn't tell me the name of it!

Christy

Hodaya, I am sooooo excited for you. You must be thrilled that FINALLY they are going to help you by doing this surgery. I wish you the very best. Are you going to try and quit smoking after the surgery? Because my dumb butt quit for 2 weeks after my hysterectomy, but I started back when my son didn't come home one night. STUPID me! I am hoping to quit when I have surgery for my loop ileostomy...which I may not have until next year. I see my doctor on the 27th to discuss what exactly needs to be done. I will try biofeedback 1st, but do not have much faith in it working.

Judy, do you have c-dif again? I don't remember your test results. I can't imagine the pain from the spasms...I had spincter spasms and there was no med or pain pill that could touch it. it was horrific pain and I couldn't hardly function when I had them. I hope you get the stent out and you are all better from that.

I am so upset that I start work Monday. I swore I was going to have surgery to correct this problem before I went back to work, but here we go again...another school year with my same issues. Hope everyone is well, Tracy

hey Tracy, i didn't notice you posted.. thanks hon, yes i'm thrilled! but i must say i can't help not to worry and all, but you know how it is. and yes!! i'm so really hoping to stop smoking after this surgery, i SO hope this will be a great boost to really do it, cuase usually my will power is 0!!

i don't think you should let your job determine when you should have surgery, your health is more important and i think you shouldn't wait at all and have it asap, you can't know what can happen during this yr, a lot of things can change, or they could get worse and you don't know if you'll be able to have it then either, i say don't wait anymore. if you reciently had all the tests and your drs are able to figure out a plan, then don't wait another whole yr, till then they may ask you to do tests again, you don't want that, if you already know what should be done, then don't wait and just do it. just my thoughts. thinking of you!

Hi all,

I had my appointment yesterday at UNC GI Clinic at 9:20.  I had the appointment with the head of the GI department.  I was very impressed with him.  He had already received all my records, x-rays, reports, everything(it was a thick folder) He had read it all because he immediately started telling me all about my history and asking me if that was correct.  I was impressed.  He then asked a million questions, examined me(which is always a joy..lol), and then gave me his opinion. He spent more than an hour with me.  He told me that my colonic inertia seems to be very severe, and that I don't have any pelvic floor problems so he feels that surgery is my best option.  He said that my GI and my surgeon had done all the right tests and tried all the medicines that he would have tried.  He said I had been well taken care of.  So he explained the surgery in detail and told me he thought I would do very well.  He was so nice and caring, and listened to me.   He told me that Winston-Salem, NC had state of the art hospitals and that he thought I would be in good hands.  If I wanted to I could get the surgery at UNC but that would be a hardship for my family with traveling.  I have a son that has autism and leaving home a lot is not his cup of tea. 

So I am at the beach right now but when I get back I am going to call my surgeon and see about when to do the surgery.  I am thinking November or December because that is when my work slows down.  I am just so happy because now I can just relax and wait for a surgery date.

Jen

Hi!! So, I went to the doc today. He just wanted to sit down with me and discuss the pain which I have still been having. He thinks it is coming from my gallbladder but is not too keen on the idea of taking me back to surgery right now. Which I am perfectly OK with. That is the last thing that I wanted. He was also suppossed to discuss my pathology report from the colon but the darn pathologist hasnt gotten it back to him yet! He wasnt happy at all. Anyhow, at least it was not terrible news like I had anticipated.

Christy-Yes I am married. For 12 years now. Three kids ages 10, 8, and 5. I am eight weeks post op right now. I still eat pretty lightly. Grilled chicken and mashed potatoes mostly. I also eat pb and J quite a bit. I also had a hard time eating. I ate a lot of pudding, broth, mashed potatoes, and jello for probably the first 3-4 weeks. Things that are really easy to digest. I never eat fruits or veggies and am staying away from alcohol. Its really hard to decided what foods you can tolerate, but its kinda a trial by error. Thats what I have learned.

Hodaya-If an ng tube would help prevent vomiting then I would have opted for that for sure. I vomited for three days straight. OUCH!!!!! That was very painful. How old are you? Just curious. I am 32, but feel 52!!

Lizzie-I am so glad you told your doc about that scanky nurse. I cant stand rude nurses. You think they would have a hell of a lot more compasion for their patients. I know as a dental assistant I always try to give my patients the best care.

Janie, Judy, and Tracy-keeping up on you all. Hope you continue to do well. And tracy I hope you can take care of yourself. You need to put yourself first. Its hard to do but thats what I had to do and just have faith that things would turn out.

Thanks for all your concern!!
Marisa

Judy - We will definitely be praying for Sean. We have a next door neighbor (Joshua) who is 20 that has CF and is in dietary failure at this time. He is great friends with my two sons (17 and 15) and it is very hard to watch his health decline.

I am in Bham and will see the surgeon for my post op tomorrow AM. Thank you for all of the info on Zofran. They gave it to me in the hospital in my IV, but never said anything about sending me home with it. I will definitely ask for it.

Marisa - Thank goodness there was nothing wrong.

Lizzie - good for you girl!!!

Hodaya - I think it would be good for you to see your doctor one more time before surgery. You need to be perfectly comfortable with everything before surgery.

I am excited! I can now tolerate shrimp, steak, creamy chicken soup, eggs and amazingly green beans which are helping me to go!!

Love all of ya,
Christy

Hi Girls,

A quick update, called the dr about my discomfort with the stent because it was getting to the point where I really couldn't do anything without being in constant spasms.  He asked if I was taking any pain meds & I told him I was taking one darvocet before bed & one in the morning but it didn't seem to help; he decided to put me back on vicodin and I've had a much BETTER day, YAY!!!!  I could actually do a little housecleaning and not suffer for the next hour :)

Also, my daughter Steph broke up with her loser BF and went out with her old BF last night(they had been dating for 4 yrs & we adore him).  We have prayed sooooooo much that she will be led in the right direction and things will workout for her.  Things are starting to look up; just very worried as to how she will handle her very good friend Sean's passing when it happens :(

Janie - How is that new puppy of yours?  I just love dogs and just about any animal.  We have two boxers and a cat; they have always been very close to me but since this last episode of illness the won't let me out of their site, all three even come into the bathroom everytime I'm in there-lol

Just had to share some good news with you all; hope everyone is feeling good and enjoying the weekend.

Hugs and love,

Judy

Hi everyone,

Judy,

So glad to hear you are feeling better!  I hate taking drugs, but sometimes they are necessary and when they make you feel so much better, it's definitley worth it!  Hope you continue to do well.    I'm so sorry about Sean.  I'm sure you daughter will have a hard time dealing with his death when it happens, but it sounds like you'll be right there for her and that's the most important thing.  As for the boyfriend deal, we only have boys, but my youngest stepson ended up marrying a girl he had dated off and on for 5 years.  She's a nice girl, very smart (has 2 master's degrees), great job, but just doesn't "blend" with the family. Their relationship was strained from the beginning; Tom would break up with her and then they'd get back together.  This happened probably 6 or 7 times over 5 years and I just didn't think it was a good idea when they got engaged.  Well, here we are a year and a half later and their marriage is just like their dating; arguing all the time and just not really happy.  They have their good moments, but just aren't r really compatable.  Tom's wife is 31 now and anxious to have a baby and can't understand why Tom isn't ready.  I have no idea what will happen; we're hoping they work it out through counselling, but I just don't know.  As a parent you just want to jump in and "fix" things for them, no matter how old they are.  I hope your daughter makes the right choice and forgets the "loser" guy!

My little puppy is about the cutest thing I've ever seen, but she's just rotton already.  I have a crate to train her, which we used for our little dachshunds when we had them, but she wants no part of it.  She's slept with me the last 2 nights.  My husband is out of town and will be back today and I can't wait for him to see her.  She's into everything and trying to eat and chew everthing she can.  She's a two pound monster.   It's been awhile since I've trained a puppy.  Ths will definitely be interesting!

Jenise, have a wonderful time on your cruise.  I know you would have liked to have had information before your trip, but just go and enjoy yourself, and eat as much as you can!  Your doctors will be here when you get home and you can start fresh with what you're going to do after your vacation.

I'm doing ok; I start biofeedback training on Thursday,  Actually my husband has been out of town this week so I've eaten smaller dinners, and have been doing better. I had to do one enema one day, and I'm still taking metamucil but only had to drink juice one day this week.  I'm hanging in there!

Hodaya, Lizzie, Marisa, Christy and Jen, hope you all have a good weekend.  Hodaya, I know you are beyond nervous and excited; it's been a long trip but you're almost there honey!  Lizzie, sounds like you're doing well and things look promising.  Good luck!!

Janie

 

Marisa - Where do you live? Your summer sounds like ours; we haven't had too many days out of the 70's and it rains just about every day or every other day, kind of glad I haven't felt my best or I would be disappointed with the way the summer has been. The only time I watch the UFC fights are when my husbands flicks through the channels and puts it on that station for a minute or two; I'm not exactly a fan though.

Janie - So glad you are feeling better this weekend.  Have forgotten what it's like to start all over with a new puppy, I bet she's too cute for words:)  My dogs were crate trained and it was the best thing we ever did; now they aren't in the crate though, they are just very SPOILED!!!!!!!

It's tough when you see your kids struggling with their relationships; you do want to fix everything but they can't learn and grow if they don't experience.  I'm just sooooooo glad our daughter is back with her original BF; we always said we were going to adopt him if they ever broke up, that's how much we like him.

Jenise - I know it's frustrating not hearing from your dr, been there done that way too many times, but you NEED to go on your cruise and forget about all of this for now.  Go and have some fun; I hope and pray that you are feeling well on your cruise.

Hodaya - are you getting your things together?  Make sure you take your ipod if you have one, it was my lifesaver while I was in the hospital; it blocked out all of the noises and let me relax when my body started to hurt.  It was also great for sleeping at night, the only bad thing about it was I would get startled when a dr or nurse came in because I would be listening to the music with my eyes closed and not hear them then they would touch my foot or something and scare the you know what out of me.   Anyway, that was the most important item for me to take.

I hope everyone else is feeling well and having a good weekend.

Peace and prayers,

Judy