TOTAL COLECTOMY PART 23

Tracy,

As far as the colectomy goes, I feel fantastic!  Every part of that surgery was successful !!!!!  

I do contribute its success to my phenominal surgeon, my persistance of for once listening to my drs and allowing myself to heal before I did stuff, and the excellent care I get from my GI dr who frequently calls me in between appts to check on me; he also still has me follow the low residue diet even though my surgery was almost 1 year ago.  It's hard to believe it's been that long!!!!!!!!

The only problem I did have was that my old urologist over medicated me with antibiotics and I got the c difficile infection which is very painful and can be extremely dangerous to those of us with a short colon or without a colon.  So if you have the surgery and need antibiotics always make sure your drs know you've had a colectomy.

FYI - I had an open surgery and went back to work full-time 6 weeks following my surgery.  Yes, I was extremely tired but it is do-able. It will take your body up to a year to fully recover from this surgery, but slowly your body adjusts and you become stronger and healthier .

Take care,

Judy

Tracy,

C Dif is an intestinal infection that is mainly caused by antibiotics; it's when the bad bacteria takes over the good bacteria.  It can cause severe diarrhea and abdominal pain that can lead into a possible colectomy and sepsis.  I was extremely sick and my urologist kept telling me it was part of my kidney surgery, though I knew it had to be something else because I had 20+ bms that were just water-like and I couldn't even take sips of water, plus my abdomin was swollen so that I looked like I was 6 mos pregnant.  My dr finally did a ct scan 3 days later and called to say I needed emergency surgery to remove the rest of my colon which meant that I would need a bag.

We told him we were going to my colectomy surgeon 3 hours away so we went to my GI dr who performed many tests without any sedation - OUCH - and admitted me to the hospital.  One of the cultures showed c dif, I then had to be put in isolation.  C dif is contagious, so one of the good perks of it was that every time I've had kidney surgery I've gotten a private room and my husband has gotten to stay with me .  It takes a long time to get rid of the infection and it can return at anytime.  I am on my 2nd round of antibiotics and this med cost $8,000. thank God for insurance.  Next Tuesday I take my last dose so say a prayer that it doesn't return.

Also, you have to clean everything with diluted clorox to kill the spores in your house, so my dear husband has been a saint!!!!

So when I said to make sure your drs know you've had a colectomy so they don't over medicate you I was trying to help you so that you won't ever experience this nightmare that I have.

I know I have rambled on, but this infection caused me to miss 2 mos of work and almost killed me.  So I want people to know what it is about.

Judy

Judy, Your last two posts have been educational for me and I wanted to thank you for sharing the information! I'm only 2 1/2 mos post op for total colectomy and thought I should be feeling pretty much recovered by now. Just yesterday I called my surgeons nurse to ask if it is ok to take a stool softener or laxative, or what her suggestion would be. I've been having tenderness in my lower left quadrant and have been having trouble pooping again....almost having the feeling of constipation like before the surgery. She told me to go to the ER so they can rule out the start of an obstruction. So that's where I spent 7 hours last night getting home after midnight. They did some x-rays and ct scan and said all looks normal for post-op. Funny thing is I had horrible diarrhea when I got home. Oh well, at least it's out! I have been trying to add foods to my diet and that's when things have slowed down off and on until it got to the point this week of barely going. You said you were on a low residue diet for one year? I think I want to go back to that for more time to heal. Can you please give me ideas on what foods are low residue, or send me to a website for recipes? I got a list of foods like canned fruit, cooked vegies, eggs, but boy it gets tiring quickly. What did you eat for a full year?

I really do feel much better after having this surgery and would do it again. I just think I should back off on adding new foods for now. I had problems when jello was added to my diet in the hospital that required an ng tube for 6 days so I must just need more healing time.

I have never hear of c-dif. Thank you for telling us about it. I wouldn't have known to tell any drs about the tc and antibiotics. Thank you! Thank you! Thank you!

so much great information here! I am so happy I found this forum!

Hondaya, from reading... and from what I understand.. my sigmoid colon has become longer then normal - most often due to chronic constipation and straining. On top of that - I have lived with a pelvic prolapse (everything) for 20 years.. and from what I understand, my sigmoid colon has collapsed in part of my pelvis - causing a partial obstruction (which is why my stools are most likely flat in shape). A defecogram is the only real way to diagnose this - byt I do wonder why they missed it the first time 6 months ago. It is not something that has happened since my prolapse repair.. but was apparently missed. Surgery - resection of the sigmoid colon is the only way to repair this.. but with the Colonic Inertia also.. I wonder what they will suggest. With all the damage I have had to my pelvic organs.. it does worry me about pelvic dysfunction too.. but I am sure they will test for that as well. I am glad the test are revealing things.. as I was afraid they would find nothing and I'd be like this for years to come.

Judy, it's so good to hear you're happy with the outcome of your surgery! Your post is educational as well, and thankfully you pulled through your ordeal with the antibiotics!

Janie, I will agree - I always think diarrhea is much better then being constipated!

Linda, your signature line made me chuckle " allowing me to meet many people who do disgusting tests to your pooper! When they were little kids is this what they wanted to be when they grew up?" Really - I have often wondered just WHO would pick this area of specialty! One thing for sure - after my last (2nd) defecography test - I really DO NOT want to do this again!

Okay - talking about all these tests.. I am so worried about all the radiation from the x-rays! I've had foot surgery before and I have had at least 50 foot x-rays (bunions). Each time 3 x-rays on each foot..and I have added them up to 50+. On top of that the the Sitzmark study, the defecography tests.. am I the only one concerned with the radiation?

To Tinkerbell2,
I read you found out you had a sigmoidocele and were at least glad some reason for your issue showed up. Just a word from the wise, be sure it was a sigmoidocele (loop of sigmoid colon) not just a loop of small intestine (enterocele) descending AFTER the evacuation phase of the defecogram. If it really is sigmoid colon this can block the exit of stool by compressing the rectum from the outside. However, if the loop of intestine is really just a loop of small intestine this normally shows AFTER the contrast has passed on the defecogram and is not the reason for difficult evacuation. I had a defecogram at a top Boston hospital and was told it was a sigmoidocele. I went for 3 other surgical consults because the treatment for sigmoidocele is removal of the sigmoid colon. There can be leaks or strictures where the ends of the colon are stapled together, so it is risky. All 3 surgical consults told me it was a loop of sigmoid colon and I needed it out. The docs I went to removed the sigmoid colon and my right ovary due to an incidental benign cyst. Then they basically went nuts and removed the top third of my rectum, my good left ovary, raised my bladder that was not falling, resuspended my vaginal vault which was not falling, and fixed a rectocele. Where they joined the ends of my descending colon to my shortened rectum, it narrowed in to only 3 millimeters (half the diameter of a pencil) the colorectal surgeon faxed me 5 times that he would do nothing. I was unable to pass stool through this narrowing. Also because he shortened my rectum, it can no longer straighten for defecation as it could prior to surgery. My over-corrected bladder now retains much urine. From all of the overly invasive surgery I developed small bowel obstructions due to 2 loops of small intestine stuck in 3 inches of scar tissue (I was unable to eat for 7 months due to repeated small bowel adhesion obstructions.) I had to go 13 months being unable to defecate and the 7 months being unable to eat before I finally found a doctor who did the only thing that could be done to save my life. He lysed free the loops of small bowel, put in Seprafilm adhesion barrier in an effort to prevent future adhesions, then made me a permanent ileostomy stoma. I now defecate into a bag out of my small intestine but am lucky to be alive. I will be very lucky if I continue to be free of adhesion obstruction. My huge error was not having the original defecogram read by other radiologists (all medical reviwer radiologists say it was just a loop of small intestine that descended only AFTER I passed the defecogram contrast; it was not my sigmoid colon in the first place.) All I needed done was repair of the rectocele done vaginally and removal of the right ovary done laporoscopically. I'm not saying you'll fall into the trouble I did because the docs I had have a string of medmal suits behind them that I was not told of when I checked them out with our state medical board prior to dealing with them. They also do more procedures than necessary for the bucks. I know this sounds sick but it's the truth. My lawsuit will be their 10th one in just a few years. I had excellent colon transit and had no other issues. I'd suggest getting a few independent reads of your defecogram scan prior to doing anything about what supposedly is a sigmoidocele to be sure it is what you've been told. Though you say you have a colonic transit issue but CAN move your bowels with Miralax, would you be able to live the way you are? I just don't want someone to fall into the trouble I did or at the very least have a sigmoid colon out if they don't need it out. good luck. Sincerely, Rose

tinkerbell,

i have a very loop sigmoid colon as well and my left flexure (the turn between the transeverse colon to the descending colon) is also very loopy and kinked, but as you said, you have a slow transit time and i have a slow trasit time as well and the markers were scattered through out the colon after 5 days, so either way, in our case, it's best to take the whole colon out, cause studies show after yrs of experience that taking only the sigmoid colon out doesn't help with the constipation and those who had it had to go back later to have the rest of their colon out.

actually, for a while i was hoping that that's the case with me and i'll only have to have that part removed and it seemed less extreme than taking the whole colon out, but soon enough i learned that that won't be enough.

anyway, it's better not to have to go in twice. but i bet the surgeon will tell you the same.

Rose,
i was so sorry to read about what happened to you, and living with the feeling that those drs ruined your life... that's such a horrible feeling to live with, i'm so sad for you. i bet you feel anger and frustartion towards these drs, and that's not an easy feeling to live with, but i hope that somehow you manage to find some peace in your heart and that the future holds some better and more comforting days for you. ((((HUGS))))

Janie,
when did you say you're seeing your dr again? just keep telling him that you feel it's always stuck in the rectum and it makes you feel so uncomfortable, maybe he'll run some tests to show where the problem is and i hope that it's something that can be fixed easily. i so hope you can find an answer to all of this. i'll be thinking and praying for you, love!

Lizzie, thursday is the day, isn't it? good luck, honey! i'm thinking and praying for you!

well, thought i'd let you know that Amanda posted herself on facebook saying she's home now. i don't want to bother her right now. lets hope she gets better soon, so she can go back to her normal activities.

Janie, I am wondering if you may have a mild case of anismus??? I bet the poop finally comes out when alot of gas and pressure builds up in your intestines. Maybe this is why you can't go all the time. Because I can get about 30% of the poop out if alot of poop and gas builds up...but this is still after inserting suppositories. I know you don't want to use anything, but maybe 1 glycerin suppository will stimulate the rectum to evacuate???? I hate that feeling of having poop sit in my rectum...it feels like pressure and makes me feel "dirty"! But, I have a very hard time getting the poop to even come down in the rectum. I disimpact myself and if I can't get it all out of the rectum, then I will do an enema to try and clean my rectum because the water doesn't go past my rectum...and if it does, sometimes it never comes out, just makes me pee alot. Can anybody say WEIRD? Is it safe to go every other day after getting a colectomy? Have you had a defecogram lately? I hope and pray you get an answer very soon.

hey,
i wasn't sure whether to tell this to you all, cause i was thinking.... what's the point???? you'll probably be sick of hearing this (not less than me).... cause this is GETTING OLD!!!!!!

you see, the psych tells me for over than 2 weeks that he's supposed to write his letter, and the last time i've talked to him, he told me to call him today, so he tells me when i can come to take my refferal to the surgeon. so there i was calling him today, expecting to finally hear the "o.k" from him..... so he's suddenly telling me that he rethought about it all and decided he wanted to consult with another specialist, so he talked to him and now they want me to go and see this specialist cause they need AGAIN to make sure that surgery is the right thing for me..........

these drs are not going to help me. they don't want to deal with me. but for heaven sakes, why confuse me like this??????? one moment to tell me it's all decided and there's only a refferal to write and just the next moment, doubting everything all over again?????? AND why waist over a yr and a half of my life like this, if they already knew they can't help me????????? i'm so angry, mad, frustrated and hopeless.... they're DRIVING ME CRAZY!!!!!!!!!!!!!

i need to think about what to do next, cause maybe i'll have to try all over again somewhere else. maybe i'll find help when i'm 60 or 70 yrs old.......? or maybe i'll just drop dead soon....

sorry if i sound so negative, but it's SO hard to find ANYTHING possitive in my life right now!

tinkerbell, i'm so sorry, i didn't mean to scare you. that's the last thing i wanted to do. i hope everything works out for you, sounds like you're in good hands and i'm happy for you :)

thanks Linda... i'm trying not to give up (i don't have much choice, do i?) and find someone to really help me. i'm just getting so tired and sicker everyday :(

my main fear is having to have emergecy surgery, cause things are less and less moving in there and my belly is getting more and more swollen from air way up in the colon that won't move. my abd was defined by a private specialist i saw 2 weeks ago, as hypertimpanic, which means it's so full of air it's like a drum. i'm so scared.. maybe my colon can perforate just from all the air in it??? a colorectal surgeon told me once it's possible :(

i don't want to have emergency surgery, i want to have it planned, cause i want to be able to order adept and seprafilm for the previntion of adhetions and scar tissue and i want to be ready and to my surgeon to have time to plan what needs to be done exactly.. i mean emergency surgery sucks!

Hi everyone!

Tracy,

I don't know about anismus...is that the same as pelvic floor dysfunction?  I know I have that; I had a 10 lb. 3 oz baby naturally 28 years ago and my doctor blamed it on that. I also had cyctocele surgery last October, so I know I have issues there.  It is SO uncomfortable when I feel like my rectum is full.....before surgery I could go several days without a BM and not feel too terrible.  I think that was because the stool stayed in my colon and not my rectum.  Now the stool obviously moves (but still slower than I had hoped) and gets to my rectum.  I'd say about 75 % of the time it's hard to get out.  Once in awhile it will come out, but not often anymore nless I drink grape or prune juice.   I use suppositories sometimes, (not with the juice though)  and it definitely helps, but my rear is so sore and really stings if I use one.  Before surgery I'd use them but never was sore like this...not sure why.  I also have used an enema a couple times.  My surgeon told me I could use enemas, I use fleets but wonder if I should just do water enemas.  I hate doing them, but they do help.

Tinkerbell,

I had surgery on March 18, so it's been almost 4 months.  Yep, it ws 8 feet long!  My eating hasn't changed as much as I thought it would.  I stayed on low residue for the first coupld months, and still don't eat much fat, etc.  I'm not sure if I'm better or not, definitely different.  Some days I feel great, but I can't eat like I thought I'd be able to.  It's not the type of food, but the amount.  I can't eat much at all; if I eat what I used to consider a normal portion, I'm full and within a couple hours feel terrible if I can't go at all.  It's just not what I expected.  I drink grape or prune juice most nights but they give me diarrhea, but I don't care.    I had a few weeks of feeling great, going great and I got spoiled!  Now when I eat I worry about when it will come out; just like old times.  The one benefit is that I lost 12 pounds and am at the weight I've tried to get to for years!!

Hodaya,

You poor thing.  I'm so sorry you can't get a straight answer from anyone.  I totally understand how frustrated you are.  What did you say to the Dr. today?  I hope you told him how horrible all this is for you!

My dr. appointment with my surgeon is on Thursday.  I will definitely tell him what's going on with me.  I also see the hematologist on Tuesday to see if my blood clot is gone and if I passed the "clotting" test.  I had another cat scan done Friday, so hopefully the blood clot is gone and I won't have to take any medicine. 

On a happier note, has anyone heard of havanese dogs?  I thnk we're going to get one, I'm going to look at a couple pups later in the week.  They are the cutest dogs and supposed to be really sweet, loveable and smart.  If you've ever been to a circus and seen the little fluffy dog doing tricks, that's a havanese!  We lost both our little dachshunds in the last 3 years and we took a break from dogs for awhile.  Losing them is just too difficult.  I think we're ready again though.  I miss having a little pup around to sit in my lap and give me kisses.  I have a super sweet Maine Coon cat, but he's only super sweet when he wants to be!!

Janie

 

thank you so much Judy and Janie, your words of encouragement mean so much to me, you give me strength. i just feel so broken, can't stop crying, like i'm falling to peaces. i have to deal with this, and i have to keep seeking the help i need. i ♥ you guys!

Janie, i'm so sorry that things are not working out for you, but don't lose your hope, cause maybe your dr can locate the problem and take care of it and things will get better for you. thinking of you.

Judy, i'm glad you found this new kidney dr, i hope he can help you. hopefully i'll find the right one too soon.