Total Colectomy part 26

Hi guys....

Its been about 32 hrs since surgery. I finally was able to pee. I did have a catheter in after surgery and a PCA, but this am they took the foley out and i could not pee at all. Doing fine with that now. I am eating small bits of full liquid/soft diet. I had some urges tonigh and sat on the toilet and brown/black liquid with some small string sized poo! I am so excited. My site is bleading bad. I have changed it three times with mutiple gauze/bands on it. I giess its open and has a wick? in it that they are taking out tomorrow. Its open and will take 14 days to heal. I am nervous to go home on just the third day, but I guess I could be ok. Just wanted to update.

Jenise- I know the tests suck....I have had so many I cannot count! Keep believing they will make thr right decision.

To all of you, I cannot keep my eyes open, but i love you.

Lizzie

Lizzie, I am so impressed to hear from you. You are doing great. I assume this means that you have bowel sounds and gas and poop are moving along. This is a very good thing and happening very quickly. Did they say if you had alot of scar tissue? WOW, only 3 days in the hospital? Is that long enough? What are you using for pain management? I bet your stomach is very happy to be rid of the bag and can now heal. YAY I am so happy for you.

As far as me, I went to the new colorectal surgeon today and he said...colon is extremely paralyzed, that my transit marker test was grossly abnormal...he said he could give the transit marker test to everyone in the hospital and all of its workers and not one of them would have a transit marker test like mine. I felt blown away seeing as I assumed LOTS and LOTS of people have colonic inertia. He said NO, this is very rare. Have any of you guys heard this before?

He seems to think my entire problem is the colonic inertia and wants me to have the total colectomy. WHAT???? But what about my inability to poop out the barium paste on the defecogram?

He also said from my defecogram report and my botox injection, that he doesn't think biofeedback would help either, so we scratched that idea pretty quick.

He said if I have the total colectomy, that he will do it open, with a cut down the middle, not like the little c-section cut that I had with the hysterectomy. He also said he is a very good surgeon, but that he hasn't done many colectomies for colonic inertia, but has done hundreds of colectomies for cancer, chrohns, colitis, etc.

He also said colonic inertia is not life threatening. But that most people that have the surgery do it to hopefully improve their quality of life. He guaranteed that I would have bowel movements if I have the total colectomy.

He then sent me over to the hospital for a small bowel follow through. It was just xrays, but I had to drink 2 big bottles of this barium crap. It was thick and bitter. I was supposed to drink it in 10 minutes, but it took me an entire hour and I was just shivering and shuttering with every gulp. YUCK

So, long story short, I have to see him Monday at 10am. We will then go over the small bowel follow through and I will have a list of questions for him. Like, why can't I poop when it is water? I will also ask about the dreaded barium enema and for a repeat of all tests. What would ya'll do? This is doctor #2 that recommended the total colectomy.

Hi all...

I was just woken up for my vicodin, neurontin and ibuprofen. I have not been doing IV meds since this am....YES I think 3 days is crazy expecially eith my complications in recent past, but we will see. I try rvrtyone here and they wen out of their eay to get me a private room. All of the nurses remember me and it felt good to be back "home". I am very scared to leave becuase its not like it was a ton of poo or anything.....just scared.

Tracy- I do believe you need to get rid of the dreadful colon, but maybe a temp ileo for 6-8 weeks even will be sufficient. That is when they usually do them. I just had nore issues and more tests in Cleveland to verifyl and then I did an extra tw notnths if biofeedback....

So sorry, I am trying to respond to everyone, but I cannot keep my eyes open....lone enough to get eords out. I do not want to GO home tomorrow. I am so scared I will not poop. I love you all.

Lizzie

Rosemary,

No I do not live far, just about 3-4 miles. I just always go home and end up back in. I have bad abdominal pain this morning anf took two vocodin. we will see what the doctors say....I think they will say I can go......I guess reversal pts are kinda in and out if they can. My bowel just decided to be nice thid time andnot take 9 days to wake up. Dtill do not fel comfotable, but we will see.

Lizzie

Janie, that is how I am now. I take 1 dose of miralax everyday during the week. This produces a small bm everyday, maybe a teaspoon. Then over the weekend I take ALOT of miralax to kind-of blast the poop out. Of course this ruins my weekened, but it is worth it to make my stomach go down. So usually Sunday, my stomach is nice and flat.

He said if I still couldn't poop, then I could get an ileostomy.

But remember he also stressed this condition is not life threatening, just life altering.

I didn't throw up after the barium, but it made me feel awful. I had to go straight to my daughters softball game after and it took me an hour and a half to get there and I felt like crap. Then after I got there I kept feeling hot and nauseaus. I had to sit in my car several times with my socks and shoes off because it was 90 degrees. I also bought me a coke 1st thing, but I love coke and drink it all the time. It also made me feel very full. As far as it being abnormal...I think it might of taken my stomach a little long to start emptying, but after it hit my small intestines, it was quick. The entire test took 2 to 2 and a half hours. Was your like this? I am pretty sure it is normal. But, he did say if your entire gi is slow, then there is not much they can do for you. Scary, huh?

I just don't think removing my colon is going to be the answer for me. My main concern is and has been getting the stool out. Maybe it is getting hung up in my colon, right at the very end? I was talking to a friend last night and we were trying to figure out of it gets hung up in the rectum, or the colon. It just seems like I should be able to poop if it gets to my rectum. Why can't I push? I remember reading that sometimes when they remove the colon, that you have better abdominal pressures to push the poop out. Anyone ever heard this? I think Dr. Lahr said this in his book, Why Can't I Go?

I will have many more questions for this doctor come Monday morning. Maybe a new defecogram will help shed some light on this. I should be able to push the paste out. I also read that we should be able to empty the rectum in 30 seconds. WHAT? I have never done that.

As far as the colonic inertia, I have lived with this my entire life...it can be managed with miralax, but the inability to push the poop out is my MAIN CONCERN!

Lizzie, is the take down surgery less invasive? Maybe that is why they are letting you go home??? Are you still pooping?

Hi Lizzie,

Glad you live close by. Sounds like you've been down this road before with this hospital; at least if need be you can come back. But hopefully you'll be fine and won't need to. I'll keep my fingers crossed for you. Rosemary

((LIZZIE)) Just close those eyes and rest! Your body just went through a lot.. and rest is what you need!

Lizzie, i'm glad they're still keeping you in. i also had major edema going from my lower abd to my feet and it was hard as a rock and painful too! for me it took about 2 weeks for it to completely go down. are you eating normally yet? are you able to walk a little? i hope you keep getting better and more bms are to come and come and come and come :)))) Tracy, i agree with everyone else, if an organ isn't working, it should go. there's no point in leaving it in and TRUST ME, you'll feel simply relieved to have it out... FINALLY! BUT! i do think the rectal issue should be thoroughly examined, your inability to push it out is concerning and maybe Lizzie is right, maybe a temp ileostomy can help. i hope the next defecogram you're doing will help you and your surgeon decide what to do. Jenise, GOSH having these tests over and over again does sound exhausting!!!! but i guess it's for the best. from what i read and learned AND had few surgeons tell me this themselves, is that if it's CI it's best removing the whole colon and studies show that those who had only part of it removed had to go back to remove the rest of it. just so you know, in most cased the zits marker tests showed the markers are mostly in the sigmoid colon after 5 days and yet, drs now know that even so, removing only the left colon wont be enough. i, for instance, had a zits marker test on Jan 2008 and it showed markers are stuck in the sigmoid colon. then i had the test again in Jan 2009 and this time it showed all of them were in my transeverse colon. so....... what i'm trying to say is that COLONIC INERTIA GETS WORSE WITH TIME!!!! and all the studies show that when removing only the sigmoid colon, even if it works for a while, it then stops and those patients evetually had to have the rest removed. i'm SO SO SORRY and i'm truly not trying to discourage you, honey, but i say this only b/c i care and don't want you to end up so disappointed from your surgery. i just strongly think you should look into this. i'm doing o.k with the soft-liquid diet. i managed to add 2 slices of oat bread, wheat free and yeast free and it seems to go well so far. so i eat the bread in the morning with tuna and the rest of the day it's liquid, except for a 2 eggs omlet :) so far so good. i do get a little uncomfortable most of the time, like there's something close to the rectum, but not actually reaching it, and it takes a long time for it to actually get into the rectum. i also mentioned this before and i think like you Tracy and Jenise, that the end of the sigmoid colon is obstructing. it's frustrating, but it's still managable at this point post the TC. i don't know how it'll work in the long run, but i'm planing to look into it as soon as i'm able to have more tests. well..... i'm going back to work tomorrow... happy and excited, but a bit concerned things will stop once i'm not at the comfort of my home. wish me luck everyone.. love you and thinking of you all.

Jenise, yup, it's been 8 weeks since my surgery, i do feel great and ready to go back to work. i'm going for only 4 hrs for the next 2 weeks, then we'll see. anyway, i really really hope i didn't make you feel bad about your surgery. that totally wasn't my intention at all. honestly, removing the whole colon isn't so bad at all and i feel SOOO much better now... i just can't describe to you how well i am, no more bloating, no more cramps, exessive gass, excrucinating pain - all of these are TOTALLY GONE!!! it's amazing!!! true, things are not perfect and i really have to watch what i eat. i go often to the b/r, but going many times is SO much better than not going at all, cause now things are moving and flowing.. YEAH and that feels AWESOME!!

Lizzie, worms in a pile is good. Atleast the stuff is staying together. Mine is just piece after piece, kind-of like little shrimps.

Jenise, yes it is worse since my sacralcolopopexy. I too feel like I have a blockage. At times when I put my finger in my rectum I can feel a hard ball. This is poop, but it can't be reached because it is behind something. Isn't that weird? Maybe it is the mesh causing problems...I just don't know. I have never had a barium enema...have you? I refused to do the barium enema test because I am so scared of it. I am a big ole baby and do not like pain at all.

I feel very unwell tonight. My stomach looks like I am 6 months pregnant and I have a little fever. What is up with that? I am sick!

Tracy

I only have a few moments but I wanted to respond...

Tracy -
I used to live in your world. I would use 10 suppositories every night. The stool was right there but I could not get it out. If I put one suppository inside, then a small poop would follow and then I would have to insert another one. I would con’t to insert them until the pressure was gone. I have had the defo exam 3 times and every time I cannot get the paste out of my butt. I have paralyzed intestines with pelvic floor dysfunction. I had a sub-total colectomy in 2001 which helped but I still had to take lots of laxative items to have BMs. Then I had an ileostomy (bag) in 2007 which wasn’t very affective for me. If I cannot poop into the toilet, how was I suppose to poop into a bag? Go Figure? I just had a reversal. Now I have a total colectomy – small bowel is connected to rectum.

Here are a couple things that have helped me have BMs….

1. NO GLUTEN OR WHEAT – eat gluten-free pasta and breads
2. TAKE SORBITOL – you can order this from any pharmacy. You do not need a prescription. It is a natural sugar that is non-habit forming. It is a liquid and costs about $5 for a 16oz bottle. I would mix 2 tablespoons with some Gatorade powder and water. Then drink it and all you taste is Gatorade. Sorbitol has no flavor; it’s just very sweat.
3. Drink lots of water
4. Walk! Everyday take a walk…it helps.
5. Yes, you may need surgery. It has been helpful in my case.

Lizzy,

God bless you darlin’. You’re doing amazing. I am glad your not home yet and your recovery is progressing. Are you able to walk?

Janie, its not a good idea to do the prune juice with the sits marker test. It will screw up the results. They will tell you its slow but not a real problem. the reason i knw this is cause it happened to me. After my last bowel surgery, i had to have it but i am always so nervouse of a blockage, i drink plum juice alot and it screwed up my results.

Lizzie, hang in there, i know it must be hard with the open wound, so you've got to rest A LOT. i also had a 2 cm open incision cause they needed to drain the infection. it took about 2-3 weeks to completely close. i bet yours is bigger than the one i had, so it'll probably bake longer for you. till the opening of the incision i was walking all the time, but ever since they opened it, i felt more pain and felt i needed to lay down and rest most of the time till it healed and closed. the bms sound good and i really hope and pray it STAYS that way!!! as for me, crackers constipate me real bad and give me real bad gass. any wheat product constipate me bad. my advice, if you start slowing down, try to cut the crackers out. even oat bread, which is wheat free and yeast free, if i eat more than 2 slices a day i slow down significantly. it's MUCH better than the wheat bread, but still i can't allow myself too much of it either. so i mostly stick to a soft diet, it seems to work much better this way. i also stay away from ptatoes, dairy, pasta, rice, peanut butter, nuts - they all simply plug me up real bad. basically, i think it's VERY important to always make sure things are moving constantly and to NEVER let yourself be stopped up for too long. the minute i notice i'm a bit constipated, i immediately go on clear liquids. it's very important to release it in time. REST and REST A LOT! your body needs time for the wound to heal. only laying down and resting helped me with it. also, i was told i should eat lots of protein in order to help the wound close, so i ate tuna every day and eggs and chicken, they told me to eat 60-70 grams a day. now i don't need that much anymore. take good care!! it'll all be worth it in the long run!!