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Total Colectomy Part 14

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Posted 4/2/2007 8:55 PM (GMT 0)
"The Rod" did not disappoint!
We had really good seats so I did not have to stand the whole time. I was pretty tired the next day though. I ate some junk food too that may not have been a good idea and got up a few times in the night.
The price we pay for a good time I guess!
Oh my gosh though, the crowd at the concert was a little different than I am used to! I was on a date with my Dad, he was getting hit on the whole time! It was pretty funny. The ladies go crazy for Rod! It was a giant hot flash in the arena as my Dad would say...
Posted 4/2/2007 10:21 PM (GMT 0)
Resa, your cats sound awesome! How sad to lose your 16 year old cat.
I am sorry to hear about your brother. I know I will always miss my brother, too. They are worth missing. Right now it is only four months for me, I can't imagine being without him for 21 years, but hopefully that day will come for me, too.
That is so cool to hear that your son notices that you are happier. It's a good feeling to not be miserable with our bowels like we were for so many years.
My poop is green at times, too. Mostly the first two weeks after surgery. Did you eat/drink anything purple? That can do it. I wouldn't worry unless you have very ***** or very strong smelling poo. That's my 2 cents.

Phyllis, what will you name your new, bishon? You are so wonderful to adopt dogs! You saved them. Happy Easter to you, too. It's my favorite holiday.

Bootynoworky, I am so glad "The Rod" was good and that you had good seats. So did your dad get any phone numbers or is he taken? I am glad you recovered from the junk food...I am sure it was worth it.

Maybe someone could tell me how to do bold letters for your names on my laptop. I don't know how to do that outside of word, I guess.

Well, I, too work at a desk. I was able to work for 6 1/2 hours today. I am very happy about that. I would have been better off working maybe an hour less, but without the pain that I was in before the surgery, I seem to have more endurance. I usually worked 6 hour days. Maybe I will be able to work more than 18 hours per week, as in the past. I am so hoping to not have that Fibro. pain return, please God! In the mean time, I am enjoying every day without that severe pain.

Savanared, still hoping to hear how you are feeling, have your Fibro symptoms (pain) stayed away? I hope you are doing well.

Everyone else, I hope you are all well.

Blessings to all?

Jillibean



tongue
Posted 4/3/2007 12:17 AM (GMT 0)

Hi all, My soft furry friend is a cat named BC for black cat. He is kind of tattered as he got into a fight with a raccoon two years ago. His ear is torn and the fight damaged his cornea in one eye changing the color of it. I got him in 2001 from a neighbor. Some one had dropped kittens off in our neighborhood and he was a runt. He is so loving and knows when I don't feel good. He will curl up on my lap or next to me on the bed on my bad days. Pets are so faithful and it amazes me that they are able to tell when you're not feeing well.

Bootynoworky-I'm glad you had a great time with your dad at the concert. It's nice getting out, huh? I hope you have many more enjoyable times to come.

Stuck42long-Thanks for asking about me. I haven't been feeling well since I've been back from visiting my grandson. I'm having alot of abdominal cramping and it is aggravating my restless legs syndrome. It could be stress related because I had a mammogram done this past week and it showed that I have a lump in my left breast. I have an ultrasound scheduled for Friday. This kind of stuff makes me so nervous. I called the surgeon's office today and they prescribed Tylenol #3 for the crampy abdominal pain.

I hope the pain meds help with my sleeping also. Did you have to get up alot in the middle of the night to poo? I'm getting up like clockwork at 1am, 3am, 6am. I normally go to bed at 10pm. I'm not sure if I'm getting up because of the pain or the pressure. Since my surgery I'm having a hard time getting into a sleeping pattern and I'm getting very cranky from lack of sleep. I gave up caffeine several years ago so I know that's not doing it. Has anyone else had this problem? I'm 10 weeks out today and I realize my body is still healing internally.

I hope everyone is having a great Easter week and enjoying the spring weather! I can't wait to bake a ham and make scalloped potatoes!   gogently

Posted 4/3/2007 1:25 AM (GMT 0)

gogently.. How far out from your surgery are you?  I am 4 weeks out and last night I had the worst abdominal cramping i have ever experienced.  I truly thought that I ate something poisened.  My husband called the surgeon and they did not know what to think of it and called in a prescription for a muscle relaxer.  I do not know if it helped as i took it and an ambien and crashed.

Has anyone else had this???  I am begining to think that I am crazy..

MWabit

Posted 4/3/2007 4:22 PM (GMT 0)

Boy - Have I fallen behind or what LOL?

JILLIBEAN - Thank you for your kind words and thoughts!!  I'm so thankful for all of the caring people here on this thread!!  It really does my heart good to know I have others to talk to - even if it's not about the topic.  I'm very blessed to have each and every one of you!!!  Congrats on working for 6 1/2 hours!!  You mentioned that you can't imagine being without your brother for 21 years....time goes so fast Jill - it doesn't even feel real that my brother has been gone for 21 years - It only feels like yesterday in a sense.  about using the bold - when you're posting, right above the blank box you will see in blue "Standard Form" - click on the B before typing and then unclick it when you're done using the bold.  Hope this helps.

RESA - I'm also sorry to hear about the loss of your brother 21 years ago - we both lost someone very dear to us many years ago, however, I'm sure you will agree that it doesn't feel like it's been that long and time does help with the healing process.

Well, it sounds as though your babies are pretty big too.  I'm really not sure how much my Puddy Boy weighs but I know it has to be in the range of 17-22 pounds.  He's just a big boy!!  So Clyde is black and white like my Puddy - that would make him one HANDSOME boy indeed!!

I'm so glad to hear you're enjoying your time out and that your son has noticed a difference in you - that's a blessing in itself!!  Are you taking any magnesium?  I know that when I take magnesium my stool is green in color too.  I'm almost certain that ANY discomfort we feel in the abdomen is nothing more than our bodies trying to heal.  We must realize that they did A LOT of poking and prodding around during surgery.  It does get better - I know from experience.

I also had and rarely still do have the lightheadedness.  I think it has something to do with pain medications or any medication we take.  Just like everything else that has changed in and around our surgery - medication absobtion can be different.  Just a thought. 

PHYLLIS - One of my three babies has bison in her.  In fact, Alexia has Japenese Chin, Bison, Pikenese (spelling) and Poodle all mixed together and she has the sweetest disposition.  I think it's wonderful that you rescued your babies.  I rescued my Puddy Boy from a shelter and wonder why someone every got rid of him because he is so good!!

BOOTYNO - Nice to hear the "Rod" was great!!  How cute that your daddy was getting "hit" on LOL!!  I would have loved to have been there - I would have fit in with all the other "hot flashes"!!!!  Great to hear you had nice seats and it didn't take too much out of you.

GOGENTLY - One (or two) of my biggest complaints post-op - NOT sleeping AND extreme tenderness/pain the the tummy area.  I did in fact get up faithfully at certain hours like you and it will get better - again, it's a "TIME" thing - just like the pain and tenderness in and around the tummy.  I think I was 12/14 weeks out before the tenderness and pain in the tummy lightened up.  I eventually had to go see my primary to get something to help me sleep.  I was lucky if I was getting two hours of sleep a night.  BOY - did that make for some very long days.  Even with some medication to help me sleep, I still had trouble sleeping because the pain and discomfort kept waking me up, but four hours is better than two.  I would say that the first time I slept thru the night was around the 16 week post-op mark, however, I still have days that I will only sleep four to six hours and then I'm up for good.  My doctor did tell me that when we have a surgery as big as ours and the time we are under can really mess up or disturb our brains that control our sleeping patterns.

I'm sorry to hear about the findings of your mammogram and I'm sure you are very stressed.  Hopefully the ultrasound will show all is good and there's nothing to worry about.  I'm due (and have been for a while) for a mammogram.  My doctor will not prescribe me anymore hormone patches until I have one.  I was supposed to go yesterday, but I just didn't feel up to going.  As I said to Resa - it is a matter of "TIME" before all the pain and tenderness goes away. 

ANYONE I MISSED - I hope things are going good for you and getting better by the day!!   


Posted 4/3/2007 7:58 PM (GMT 0)
Hi Everyone,
PHYLLIS/STUCK42 - My stools are normal today. Not sure what is making them greenish most of the times. I drink prune and plum juice all the time - every morning. I do not take magnesium. The only meds I am taking at this time are my allergy pills. I was hoping my allergy would go away with the surgery, but no such luck. I have not eaten anything green. Like you said Phyllis if the stool doesn't smell then it is nothing to worry about.

One thing I do since surgery is crave water. I never drank it before but now I can't seem to get enough. From the time I get up until I go to sleep I am constantly drinking bottled water. One bottle empties and I open another. I must go through 10 or more bottles a day.

After surgery my sleep pattern seemed to change for the good. I was able to sleep. I used to wake up about 4 to 5 times a night to empty my bladder before surgery. Now I do not seem to need to empty as much. I guess the colon was putting pressure on the bladder. There were times I would wake and simply could not go back to sleep. I had maybe 4 to 6 hours a night sometimes less. I now wake about 2 times a night these days to have a BM and empty the bladder some nights I sleep through. Last night though I was back to my old sleep pattern. I was up to stay at 1:00 a.m.

GOGENTLY - sorry to hear they saw a lump when they did your mamogram. That would be stressful to anyone. I had a cysts about four years ago and feeling that stressed me out. Hopefully, it is something that will clear itself up on its own.

I hope everyone is doing good.
Posted 4/3/2007 10:19 PM (GMT 0)
:-)  RESA - Nice to hear your stools are normal today!!  I'm at a loss about the greenish stool - I know that when I have green stools (not too often) it's due to the magnesium I take everyday.  OK - are you telling me your stool doesn't smell LOL?  I must say that mine DOES smells and at times pretty bad.  This is one of the reasons I don't venture out too far from my comfort zone.  You may have something with the prune/plum juice and the green stools, as the juice does have a dark color to it.  Since my surgery I dring Mott's no sugar added apple juice every morning.

I think it's great that you're body is craving water!!  Water is so good for you.  It really helps flush our systems out!!  I've ALWAYS been a big water drinker, at least a gallon a day!!!  No, I'm not diabetic, I just love my water and been this way my entire life!! 

Glad to hear your sleep pattern improved!!  You mentioned that you used to have to get up often to empty your bladder - I think you're right about the colon putting pressure on the bladder.  Before surgery I had a little issue when I would laugh hard or sneeze - since surgery I don't have that problem. 

Posted 4/4/2007 2:14 AM (GMT 0)
STUCK42LONG, I don't have anything that says, "standard form" with a B for bold. Does your reply form say, mCode is Disabled, above the emoticons? No big deal, but I think I am missing something to control the font in any way. Thanks for your nice reply.
GOGENTLY, I am praying for you, and I just know that you will be okay. Please keep us posted on how the ultrasound goes.

I saw my surgeon today....I love her! I explained to her that my legs hurt last night and my shoulders hurt this morning, after working yesterday. She said that was normal, and reminded me what a huge surgery this was. She says that 75% of her patients with chronic pain or Fibromyalgia, who have their colon removed due to colonic inertia, recover completely from their pain. She looked me dead in the eye, and referring to the pain that I had before surgery, said "It's GONE... It is NEVER coming back. Because of my freedom from pain, and her experience, and what I know about God, I believe her! I always believed that God was totally capable of healing anyone, I just never thought He would heal, me. I just know she is correct.

She also said, that sex would be okay now, (3 weeks out), of course that was my husband's question. She said it depends on how I feel, and I know I'm not quite there yet, but good to know it's safe.

She did remove my appendix, which is connected to the large bowel, so I'll never need to worry about that. Also, our stool should not be watery, and if it is, she recommends, Immodium, but our stool should always be soft. Yipee!!!

I told her my tummy hurts when I eat, and she said that she removed a huge, toxic, organ from my body, and since everything inside me is still trying to figure out where it lives, now that there is so much room, that pain is normal. She offered me more pain medicine, and I gleefully declined, thinking that a person without chronic pain may need pain meds now, but me, who has had pain for 9 years, doesn't need it.

I took my mom out for lunch after my appt., and we laughed and we cried, celebrating this miracle of healing through the gifted hands of my surgeon. I am so happy for my parents to have their daughter, me, healed of such a hideous condition, as they are suffering deeply the loss of their son, and one less child to hurt for is a gift to them.

I wanted you all to be the first to know, even before my extended family, because we will all be sooooooooo much better now, and for the new people to see what they have to look forward to.

Blessings tongue
Posted 4/4/2007 11:05 PM (GMT 0)
yeah  JILLIBEAN - First things first - NO, when I reply it doesn't say mCode disabled.  Maybe somewhere in the control panel you can find more information about it - SO SORRY!!!

NOW ON TO BIGGER AND BRIGHTER THINGS....Your post today really brightened and blessed my day!!!  Yes, God is SO good!!  I know there are times when we don't understand things, but God ALWAYS knows what He has in store for us.  We may have to travel thru a lot of valleys in our lifetime but we NEVER travel them alone!  God is faithful and I know beyond a shadow of doubt that He works on His timing and not ours. 

I BELIEVE that all of us that have been thru this surgery can't and don't comprehend just how HUGE this surgery is and the toll it takes on our bodies - not until it's all over and we're left to heal.  It's a very time cosuming process to say the least!  Not only were we "TOXIC" pre-surgery, everything was once "SMASHED" together, now our bodies are left with this big empty space and things are free to move about.  I contributed my pain/tenderness in the belly for 12 plus weeks to exactly this, if that makes any sense (I also don't have any female organs left so things really had a hay day finding a new home LOL)!!!

I do know that I would have this surgery ALL OVER AGAIN without question - it is worth every single thing I've been thru - EVERYTHING!!!!!  In a sense it has made me appreciate a new "quality" of life - something I NEVER knew existed because I suffered with this my ENTIRE life - all the way back to when I was 15 months old!!!  Not to mention all the wonderful, lovely, precious, and caring people I hope to have in my life for a very, very long time!!  All of you have blessed me in one way or another and I'm thankful we've been thru this journey together!!

Jill, I can only imagine the joy your mother feels right now - something she needs at this very moment and time - and your daddy too!!  If I could have, I would have sat and laughed and cried with you and your mom!!

Hugs and blessings to you!!!! 

Posted 4/5/2007 3:42 PM (GMT 0)
I'm so excited that I finally get to post! It's taken me probably about two weeks to go from total colectomy part 1 to here. I've read so much great information like I know you all have and I'm thrilled after seeing the people who started this thread leave(so sad...wish they would come back and give us an update..maybe someone could email them and ask)...that a new group of colectomeees are here sharing their experiences and questions. Ok so I've been taking notes this whole time and have a bunch of questions for the people who are now in The Know of what to expect and I'd love any and all answers or opinions.....

I'm curious if anyone noticed a change in cholesterol levels after surgery.

I had my gallbladder out and I wonder if those who have had theirs out had a tougher time than others in recovery. My thinking is because if you have a steady stream of bile going through you from the liver like we do....then wouldn't that irritate the place where we are reconnected?

I'm also a fibromyalgia person and I am so excited to hear that others feel the pain is gone or better. I know that my diet has a bunch to do with this because if I am on a strict low glycemic diet, then I don't have the pains. As soon as I have a carb that will raise my blood sugar levels I get the muscles aches.

I saw someone else say that their liver enzymes AST and ALT were high. Mine have been too sometimes and I wonder if having stool backed up in the colon might some how clog up the liver and cause those to be high. Has anyone noticed if they keep records of their past blood work(I also ask for copies to keep at home...its interesting) and noticed a difference? I was told it's not hepititis related because all the enzymes would be up.

I've also noticed that I get numb feet sometimes. Anyone else have this problem and notice a difference after surgery? I'm wondering if they are a result of my fibro, or laxitive use or the toxic colon.....

I've really wondered why we get this problem and my story...it's a bit long....makes me think it might be related to adhesions for me. When I was 14 and again 17 I had the first weight loss surgeries. The second was a revision. I'm 39 now and in 2004 I had those surgeries reversed because scar tissue built up where the ring was and I couldn't keep food down. It was after that surgery that I became constipated. So for me, I believe my colon either got kinked during the surgery or grew adhesions during the healing process that cut off parts of my colon and it's dead in certain parts. I believe other people probably from infections or laxitive use might damage their colons to cause this problem as well. What do you guys think?

Oh more about how I came to this place....after 2004 I went to this gi who just prescribed and prescribed and prescribed...after 2 years he told me there was nothing else he can do about it and he didn't believe in surgery. I found information about adhesions and when I brought this to my gi...he said oh yeah that's probably it...and I was pretty upset that he never mentioned this to me and I had to figure it out on my own. So then I found a specialist in Ohio for adhesions and colons etc named Dr. Semertzides. I'm from Illinois near the Wisconsin border. I emailed him and he said I should come down and see him. I did that...6 hrs from me...and we scheduled a surgery. I was there about a week and it was a lap procedure. There was one part of my stomach where you could see it was dimpled in from adhesions and that went away. Also I was to the point of getting sick all the time from the constipation and that was better, but it didn't cure me. So he had me do a gallbladder test back home which I did and my gallbladder wasn't doing good. So he removed that a few months later to see if that was the problem. Well it wasn't unfortunatly. He had told me that if that didn't cure the problem then the colectomy would be needed. Soooo that's where I am. I'm scheduled for May 4th to have a sub total colectomy where he will leave about 18" of colon. I've read people saying that a total is the rectum too, but I think the difference is that a subtotal leaves part of the colon and a total takes it all. I'm a bit worried that a sub total won't do the trick and I'll have to go back, but at the same time I like the try and see before taking it all approach. I did talk to another patient of his who had the subtotal and she's very happy and everything is working great for her. She goes 3 times a day and is thrilled with her new life.

Ok to keep myself entertained while in this painful situation...I came up with colectomy jokes...I know their probably lame, but figured they might make someone smile when they can relate......

Jokes

You know you have you colonic inertia when.....

When you hear your neighbor has the stomach flu and they start to think your stalking them.

When your pharmacy bill exceeds your grocery bill.

When instead of buying clothes that are larger to give your tummy room, you pull out your old maternity clothes.

When you have a weeks worth of clothes laying on the toilet instead of the treadmill.

When the pharmacist and your gi doctor start to send you Christmas cards.

When you know your husband has just been in the bathroom way too long and your first thoughts are jealousy.

When instead of asking the other person in the elevator how's the weather, you ask how often they go????

After a colectomy the things that happen......

You realize you have an extra shelf in your medicine cabinet.

Your pharmacist calls the police to report you as a missing person

The gas station attendants start to think you have a crush on them because you keep coming in without buying gas.


I'm hoping I can relate to these last jokes soon :-)

Stephanie- wife and mother of Ashley 12 and Ryan 7

Posted 4/5/2007 8:10 PM (GMT 0)

tyblossom,

Welcome to the TC forum! I too have fibro and have noticed a difference in my symptoms since my open TC surgery 10 weeks ago. I've noticed that since my surgery that my restless legs syndrome has come back unfortunately and yes I did have that weird foot and leg feeling before my surgery. Hopefully the RLS is just a temporary thing and I'm just regressing through my symptoms. A huge plus is the migraines and the bladder infections have subsided for me. I like your jokes especially about being jealous of your husband. I actually remember doing that! I too had to focus on my humor to just get through this. I know that the last few weeks before surgery you get to the point where every day you had wished you had it behind you (no pun intended) :-)

This is a great site and loaded with info...I'm glad that you went back and read all the posts...I had done the same before my surgery and it really put me at ease. This is so much more info than I was ever given by my surgeon although he was very thorough at answering most of the questions I asked of him. So if you ask me if I'm happy I did it, I will have to answer with a resounding 'Yes!'. I'm still 'sore' from surgery but it's not fibro 'pain'. I still get the 'pain' once in a while but I think it's because my body is detoxing. My naturopath said it may take up to a year to get all the gunk out of my cells. I can now handle the occasional 'pain' with just tylenol and ibuprofen where before I was on vicodin for the past 5 years. So this is a huge improvement!

I will pray that you will be at peace while waiting. Make sure you make a list of what you will need for when you go to the hospital and when you get home. It really helps. Any info you need, just ask the people on this site. They are great with replys and ideas. I have my blood work done tomorrow and will let you know about the chloesterol and the liver counts. They did my blood work one week before my surgery and I'm interested to see how they compare!

Have a great Easter Weekend!

gogently

Posted 4/5/2007 8:21 PM (GMT 0)

Hi Everyone,

I just wanted to wish every one a wonderful Easter weekend! What a change we have gone through in the past weeks, months, and year! We have so much to be thankful for. I would ask you to reflect how things were a year ago as compared to now and post for the newbies to encourage them. I'm thankful that I'm not so tired any more and actually want to spend time with family and friends. I hadn't realized how much of a recluse I had become until people started pointing it out to me! Wow...I lost so much time just staying at home and not feeling 'well' and frustrated because the docs couldn't tell me why I was so ill. So now I'm vowing to live life to the fullest because I've been given a second chance. I am very thankful...to begin my 'new' life!

gogently

Posted 4/6/2007 2:50 AM (GMT 0)
:-)  Hi AND Welcome Tyblossom!!!  You have definitely found the right place!!  I'm so excited to hear that you've gone back to TC 1 and read all the way thru to TC 14 - You're doing the best thing possible by educating yourself prior to surgery.  The best thing about this thread is...you get "real" people with "real" experiences, something that's invaluable and cannot be found anywhere else!!  I'm sure, as you've read, we all have similar experiences, yet we're all different in some ways, all at the same time.  The bottom line.....we can relate, encourage, inform, and help those going thru this or about to go thru this.

What I find amazing about the people here....if one person can't relate to something specific, someone else can.  I cannot relate the your gallbladder, fibro issues, or liver enzymes, but rest assured, someone else CAN and WILL :-) !!!

Boy, you sure do have a long history - you poor thing!!  I think a lot of us here have had to find things on our own unfortunately.  I never knew, nor was told, that such a sugery as this even existed.  I had to find it on my own and take it from there.  I'm thankful that I finally found the right doctors and finally a diagnosis of Colonic Inertia - something I've suffered with my ENTIRE life.  I feel blessed that I didn't develop cancer or something else from carrying around a TOXIC body for so long (40 plus years).  Thank God for the technology we have today - compared to even 10 short years ago, so in a way, I am really blessed that I'm where I am in time.  I had my TC 11-09-06 and it is THE best decision I've ever made in my life.  I would do it again in a heartbeat - I FINALLY have a life after so many years.  There's NO surgar coating what a HUGE sugery this is, and by no means is it a piece of cake as I'm sure you've already read.  However, what I've gained in these few short months post-op is AMAZING!!!

As GOGENTLY suggested, we do have so much to be thankful for in what we've been thru in the past weeks, months, and year!!  My life a year ago was NIL  I too was a recluse.  I was in so much pain and unable to do much of anything outside of my house.  It's as if all of the sudden, ALL those years just took its toll.  I could not find any comfort and basically was in bed most of the time.  I walked around looking like I was 10 months pregnant.  I have a 13 year old daughter who's life was put on hold last summer because I wasn't able to do much of anything.  

Oh - I absolutely love your jokes LOL!!  They couldn't hold anymore truth to them!  What a wonderful sense of humor you have and I look forward to the furture you're about to gain!!  We will all be here to listen and encourage you in any way we possibly can. 

God bless you!!

 

Posted 4/7/2007 6:14 PM (GMT 0)
Hi gogently-thanks for the warm welcome :-) How did your tests turn out? Did you get the results? Did you have this as an open or a lap? I'm having mine open with an epideral for 4 days. I've had a total of 3 major surgeries and 2 lap surgeries. I had two when I was 14 and then 17. That was horrible. I had them on my stomach and they were way up high so they had to do the ribs thing and back with the first they didn't have the pain pump. When I was 17 they did have that and that helped, but still was horrible. Back in 2004 when I had those reversed I had the epideral in for 5 days and it was WONDERFUL. I just felt sore a bit and by the time I had the epideral removed, I had no problem controlling the pain. Then I had adhesion surgery and gallbladder surgery both done lapriscopically and I think I felt back to normal within a week. This will be open like I said and I asked my surgeon for an epideral and he was fine with it. I highly recommend anyone getting an open to consider having that. Your blocked from your waist to your upper thighs so you can still walk no problem, but hardly feel the pain.

Hi Robin-I can't imagine living this way for all your life. I've only had it for 3 years since my last surgery. You must have felt like someone who could never hear all the sudden feels when they fist hear with those new implant things. What was that like for you?

I can't wait to get this surgery over with. I got an email from my surgeon and he still wants to leave some of the colon, so that's what we're going to do. He also said that he's fine with me chewing gum. He also said with all my surgeries that I can choose the prep I want LOL. I'm probably going to take one or two fleets on the Tuesday before, then we will drive down to Ohio and then Thursday I'll take another fleet or two in the hotel. So I'll have a soft/liquid diet Tuesday and all liquids on Wed and Thursday. I like the fleet because I had just hold my nose and drink it straight and then guzzle water after.

I'm a little worried about coming home and losing it, so I bought some Depends through Walgreens.com along with a bunch of other things....Sugar Free hard candy, flushable baby wipes, they had a wipe with witch hazel which I thought would be good. Oh and a tip for anyone with a sore bottom...my Mom has always had problems with hemroids and she keeps witch hazel in the fridge so it is nice and cold when putting it on. I'm also going to ask him for a cream to prescribe, I'm going to ask him for my operative reports in case I have any problems coming home, some type of gas x prescription, oh and I got some vitamin E ointment for the scar. He's going to fix mine because I have "dog ears" they're called from my last big surgery..it's where the skin doesn't lay flat...I had a tummy tuck during that operation. Now I have a scar the shape of an anchor.

Oh and I learned something from the person who had this surgery by my surgeon that I talked to. She told me that since I'm from out of state, the hospital will try and give me a private room and allow my husband to stay with me. Just in case anyone else has a similar situation..maybe they can ask about that. I wish I had know the other times because we spent a bunch of hotel rooms for him. I did realize while doing our taxes this year that you can deduct those expenses.

Stephanie
Posted 4/8/2007 1:23 AM (GMT 0)

Tyblossom... Welcome to the site.  I love your sense of humor.  I have to find humor in everything well almost everything.  I did have high liver counts and it was not hepatitis.  After 5 days in the hospital (prior to TC surgery) they talked about a liver biopsy but fortunatley the counts came down the next day.  i do not know what to attribute it to but right after that I had a procedure done called and ERCP and developed cholangitis and I still wonder if the liver counts had something to do with it.  I had my gall bladder out in 1992 but I think that my recovery was quick.  I have Fibro and I hear others saying that they are not having problems since surgery.  I wish that I could say that same. I too had some of my large intestine left (about 6").  You will defintly find a lot of good advise and encouragement on this site. 

I am 6 weeks out from my surgery (open) and doing pretty good.  My biggest complaint is that I have the worst gas redface   I truly can clear a room.  I offered to sleep in another room!!  I hope this goes away.  My husband will actualy get up and leave the room yeah and he has pulled the car over and gotten out!! it is truly bad skull    I guess if I was a guy I would be proud of myself and while I crack up when he has to leave the room (yes its payback time) it is becomming a concern.  Anyone have any comments?

Hope everyone is feeling well... Happy Easter

MWabit

Posted 4/8/2007 3:39 PM (GMT 0)
:-)  HAPPY EASTER = I hope all of you have a wonderful and blessed day!!

TYBLOSSOM - You asked what it was like for me?  Oh, I don't even know where to begin!  The last five months have been amazing for me!!  I have had more bowel movements in five months than I've had in 44 years.  I no longer look 10 months pregnant and I'm down about 20/25 pounds (which I needed to lose).  This has just been a TRUE LIFE CHANGE for me.

My Total Colectomy was on 11-09-06.  I thankfully had my surgery laparoscopic.  Surgery was supposed to be three or four hours, however, due to my colon being large and loopy, surgery took seven and a half hours, with five and half feet of colon being removed.  My hospital stay was only four days.  During those four days I was up and moving around several times a day (and night - couldn't sleep in the hospital - they don't let you rest LOL).  My pain was tolerable with pain medication (I have a high tolerance to pain).  Then 10 days post-op I started experiencing a lot of pain in which the medication wasn't helping.  I spent the Saturday and Sunday after Thanksgiving in the ER, finally being admitted on Sunday night because the CAT scans weren't revealing much of anything relating to the pain I was having.  My surgeon was beginning to suspect that it could be a blood supply issue in the area where they connected the small intestine to the rectum and tests were done to rule that out.  It all came down to just me needing a different, more powerful pain medication for an additional week or so.  (My personal opinon is that due to me having a total hysterecomy in 2003 - everything inside was shifting and finding a new home - once the internal swelling started to go down)  I remained very sore and tender for the first 12 weeks post-op.  After that point, things continued up hill and by 16 weeks I felt the best I've felt in a very, very long time.

I too am no stranger to surgery - I've had female problems going all the way back to my teens (Endometriosis).  I've had a total of 13 abdominal surgeries - (not including my hysterectomy) - one was open (laparodomy) - the rest were done laparoscopic.  My Total Colectomy, by far, was the biggest - recovery the longest. 

I would have this surgery again in a heartbeat!!  I only wish I knew of the procedure years ago, but thankful it wasn't until now that I had it because technology has advanced so much than just a few short years ago, not to mention, I had one of the best surgeons in my region.  It is all in God's timing not my timing!!

I also went thru the pre-op prep and I can tell you that it took an additional eight hospital style enemas to clean me out the morning of surgery - so be prepared.  I remember asking the nurse was it "normal" to have so many and she told me that the most she had ever given prior to me was seven - go figure LOL!!

I'm honestly THANKFUL for EVERY bowel movement I have LOL!!!  I go anywhere from three to seven times a day.  Management gets better with time too.  In the beginning it was like "oops - gotta go - move out of my way" LOL!!  

Well, I really must close - one of the grandboys is here - oh, he's so sweet!!! 

Posted 4/8/2007 8:16 PM (GMT 0)

Hi everybody,

I am new to this forum and don´t know if I am doing everything right so please let me know!

I am a 22 year old girl from Germany and have suffered from total enteral dysmotility(including colonic inertia) since I am 14. Currently I am completely fed through a nasal j-tube which goes right into my small intestine ( I am very underweight). I have tried every laxative, every alternative treatment, simply EVERYTHING. I have had various tests, my colon transit time is above 150 hours and my colon is massively elongated. I have been to numerous clinics and doctors but none of them understand because they all think I have anorexia( which I had when I was 12). Everybody just tells me to eat normally and everything would be good again...

I have done a lot of research on colectomies and I actually really want to have this. I am very scared though because I hate surgeries and since I am so compromised now, I want to stabilize first. Not that I even have a surgeon who would do this surgery on me...here in Germany you are told to eat fiber, drink plenty, exercise...colectomy is rarely done here for constipation!

Anyway, I just wanted to say hello. If anybody knows anything about colectomies on people who suffer from dysmotility in the stomach, small and large intestine, I would love to know it!

Thank you!

Posted 4/8/2007 10:52 PM (GMT 0)
:-)  OK - the grandbaby left.  He is so precious.  He will be one next month.

MWABIT - I'm so happy to hear that you are feeling better!!  I'm sorry to hear you're having a lot of "room clearing" gas!!  Since my surgery I can say that I haven't really had any problems due to gas.  The gas that I do get is very minimal and seems to come along with the bowel movement.  I can say that once I leave the bathroom after a bowel movement, well, it's safe to say I need to hang a "CAUTION" sign up (thank goodness for Febreeze) LOL!!!

I really got a laugh about your husband, him leaving the room OR pulling the car over, he sounds just like mine.  My husband has a very weak stomach and it doesn't take much for him to gag and carry on.  I do have to admit that I have to laugh myself at times too!!  Hopefully this will improve with time - just like everything else in our healing process.

DANAALBERTINE - Hello and nice to meet you!!  My heart goes out to you - you're so young.  I'm sorry to hear that you're having a difficult time finding someone in Germany willing to do surgery for your condition.  Have you sought out a Colorectal Specialist/Surgeon?  That is where I would begin and I would take all of my test results along me if or when you can get in to see a specialist.  I would also take any and all information you've gathered on a colectomy during your initial appointment with a specialist.

You sound as though you're pretty frail at the moment and maybe waiting until you've regained strength and weight is in your best interest.  This is a very big surgery and there's no sugar coating it.  I would suggest going back thru the posts here and read, read, and read some of the experiences others have had post-op.  

I do hope you will find the help you need and you're able to begin an uphill climb toward strengthening your body.  You need to do this before surgery is considered in my opinion.  

Please keep posting - this is a great place for encouragement!!  Hugs to you sweetie!!!   

Posted 4/9/2007 7:52 AM (GMT 0)
Stuck42LONG: Thank you for your answer. Yes, even if I had someone wanting to do surgery on me, I would definetely want to gain strength and weight first. I am very frustrated and helpless though, because everybody here categorizes me as being anorexic...the doctors believe that if you have had an eating disorder once, you will always have it. I spent over 10 months in a row in different clinics in 2005, I had two port-a-caths fot IV nutrition but got a sepsis infection and lung collapse so I was in the Intensive Care Unit. The doctors there, who still didn´t believe that I had actual digestive problems, even went to court and had a judge send me to a psychiatry where I couldn´t leave! I was forced to stay in bed and couldn´t have any visitors. I was watched 24/7 an sometimes strained onto the bed and tranquilized...it was the most horible thing I have ever experienced. The doctors said I was "obsessed" with my colon and elimination ...
But I am very happy to have found this forum !
Thanks again and have a great day.
Posted 4/9/2007 1:26 PM (GMT 0)

mwabit-You are soooo funny. I think we need a woman cheer for us being proud of body noises and smells LOL WOOO WOOO WOOO! I can't wait till I can be proud of them too! That's so interesting about the liver...I really think the back up of food in the colon could cause that. Mine have gone up and gone down too...they don't just stay up and the doctors seem to think it's weird that just those two go up. I'm sorry about your fibro not feeling better after surgery. Have you ever tried a low glycemic diet? I just happened to figure out that high glycemic foods cause flare ups...things like sugar foods or potatoes or breads. The diet I started on was SugarBusters. Maybe you could try it for a week to see what you notice.

Robin-I hope so bad that I lose weight after this. I weighed 320lbs back when I was a kid and lost part of it when I had the weight loss surgeries, but then gained up to 280 till about 8 years ago when I got down to 175 which was actually a comfortable weight for me. Welllll....in the past 3 yeas since I had my weight loss surgery reversed because of the problems...I gained 30 back and still feel like I'm gaining. I really really feel though that a lot of the weight gain is because the foods just sitting in my colon. That and I'm just not moving like I was. I've talked to other people who seem to not eat with this problem, but I keep getting this feeling that if I eat or drink...it will push it through. Not logical, I know. Most of the time I drink coffee all day and just get sooo bloated. Today I feel awful and I'm taking the kids to a waterpark because their off school and my daughter's birthday is tomorrow....I can't wait to enjoy life again....just a few more weeks :-) yippeeee! It's nice to hear someone else saying they could use the weight loss. There seems to be so many that are so thin with the opposite problem. You've really been through so much. This has to be such a great time in your life. All those surgeries....wow. It's kinda funny that now I actually enjoy going for surgery because it feels like a vacation. I think I've just gotten really good at handling pain.

What happens when you have a hysterectomy? Do you no longer have endometriosis? Isn't that where you have adhesions in that area?

I hope I don't have to have so many enemas. I think three days should do it, but you never know. I just hate to have them in a hospital setting. I had those as a kid before my first two surgeries...that's how they used to clean you out. I don't think I took anything orally...and I used to have to spend the night before in the hospital.

dana-hi there. Wow you've really been through an ordeal. My step dad had sepsis and that's really scary. I think most doctors lie to us and make up excuses as to why not do this surgery for the people who suffer from it. I believe that if the tests show that you have this, then it's not you being obsessed with it. So if you haven't had the sitz marker test, have that one because it will show how slow your colon in. You'd have to be back on regular food though I would think before you can do that test.

Posted 4/9/2007 3:14 PM (GMT 0)

Hello everyone I hope you all are feeling well today.

Dana... be sure to gain weight before you have this surgery and be in the best health possible this is not something to have done when you are not in the best shape possible.  I have a very difficult and extended hospital stay and I realy do attribute it to the fact that I had lost weight and was sick (liver counts and cholangitis) 4 months prior to surgery.  My recovery was long and hard and I am not a wimp.  If you so need this surgery take this time that you are looking for a specialist to gain weight and be as healthy as you can.  I am still struggling with the weight issue.  I know that a lot of people do not think that it is a big thing to be too thin I am 102 lbs. if you get to be under 100 you have to start worrying about health issues and possible intervention. I see the Dr. on wednesday and I am going to ask if protein drinks would help.  I am eating just can not eat as big portions as most.  Hope this helps

MWabit

Posted 4/9/2007 9:55 PM (GMT 0)
Hi Everyone,

Welcome to Tyblossom and Dana.

DANA - I am sorry to hear you are in a problem spot in your life. If you are thin you should gain weight before the surgery. I am on the heavy side and after surgery I lost almost 30 pounds. I will be a month post op on the 12th. I still need to loose 40 more though. I gained this weight after I had a pituitary gland problem in 2002. The doctors fixed the gland problem but the weight never came off. I hope you can find a surgeon who will listen to you.

I noticed on my belly button what I thought was dry skin. I tried to pull it off and noticed that it is a stitch sticking out. I thought the stitches they use inside were supposed to be dissolvable. I will advise the surgeon when I see him. Perhaps he will just cut it off. It crosses my mind and scars me a little that perhaps he used the incorrect type of stitching.

Okay, I am going to say something that I find weird. I am curious if anything similar has happened to any one else after they had surgery. Mind you they do not relate, I don't think, to the colon. 1. Before surgery I loved sweets. I couldn't get enough. I craved them so much. They were an addiction to me. 2. I also could not stand to drink water. Now that I have had surgery I have not craved a single sweet. Been clean since my first post op day. Also I cannot get enough water. I drink it all day long. I crave this stuff. I prefer water over any other beverage now. Another thing I have not drank coffee since surgery. I don't mind this happening I just find it wierd. I am also praying that my cravings will not return.

Something else I have noticed since surgery - my fingernails are actually growing and my brown spots are slowly fading.

Has anyone else noticed that if they do not drink prune juice or something similar that they do not have a BM. I have noticed that if I do not drink my prune juice every morning I do not go. This sort of disturbs me. Another item I need to discuss with the surgeon.

I hope everyone had a very good Eastern Sunday.
Posted 4/10/2007 3:05 AM (GMT 0)

Resa..  I can not say that I do not like sweets I love em!! especialy ice-cream however since the surgery I can not stand any kind of soda.  I used to drink diet coke all the time (at least once a day) and I too love water now where I did not before.  I believe that our bodies tell us what we need (in the hospital i craved bananas and peaches) we just need to "listen"  I think the water thing is because we go to the bathroom more and so we need to stay hydrated. tongue Hope all are well

MWabit

Posted 4/10/2007 9:22 PM (GMT 0)
DANA - Hopefully you will start to gain weight and regain your strength.  As a few of us have stated, you MUST be in good health prior to having this surgery - it's big and recovery is not something that happens over night!! 

TYBLOSSOM - Regarding my hysterectomy - yes, it took care of the endometriosis, thank God!!  Due to the amount of surgeries in that region, yes, there was adhesions that also played a role in the hysterectomy (the second best surgery I've had - the TC was THE best surgery I've had)!!!!

RESA - It sounds as though this surgery improved a lot of things for you!!  Drinking water is so good for you.  I've always drank a lot of water - it's always been my pick over any other other type of beverage.  I'm not a real "candy" (chocolate) eater, but I do like sweets.  I have my days when sweets sound good, but not too often (thankfully).

Don't worry too much about "not going" - we will have our slow days.  I can't get prune juice down, however, I love prunes.  I also have slow days.  Here's a tip....SUGAR FREE DARK CHOCOLATE!!  Hershey's make a GOOD sugar free dark chocolate (they come in a bag with individually wrapped pieces) - Same goes for Dove dark chocolate.  Seeing I like prunes, Sunsweet has these flavored prunes "Cherry Essence" that are really good.  I will eat four or so prunes and one or two pieces of the sugar free chocolate - it works!!  I drink Mott's apple juice EVERY morning faithfully, even then, I can have slow days.

I'm a real coffee lover!!  It was almost 12 weeks post-op before I could even get a cup of coffee down - that was real strange for me, however, I got my taste back for it and don't have a problem getting it down anymore.

MWabit - Isn't it wonderful that our body craves what's best for us!!  Continue with drinking the water - it's better for you than any other thing beverage.  I too took a real craving for bananas after surgery.  In fact, I probably eat a "bunch" each week.

OTHERS - I hope everyone had a nice Easter Holiday!!  How's everyone doing?

Posted 4/11/2007 10:11 AM (GMT 0)
Thanks to all your replys. I know I need to be in a better position to get surgery. I am trying my best ut for some reason, I am just not gaining weight. I get a lot of calories through my feeding tube but still I am just maintaining a very low weight. I think I have some kind of malabsorbtion.

Do any of you have motility problems in the upper GI tract as well? I am really wondering what the success rate of colectomies is in people who suffer from general GI dysmotility. I have had some doctors saying that a colectomy only is successful when it´s just the colon being slow. Others say that it´s all one big problem and if you remove the colon, your small intestine and stomach could start to work faster as well...I don´t know what to believe!

I hope everyone is having a good day-

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