TOTAL COLECTOMY PART 24

Lizzie honey, I'm so sorry you're having so many problems.  It just doesn't seem fair.  You have been through so much already; I hope another doctor is able to help you.  There certainly should be another doctor covering for your doctor.  That just doesn't sound right to me; I know when you're tired and sick and weak you don't feel like fighting, but you need to insist that someone help you resolve these issues.  You have just had way too many problems. I know nothing about stomas, but you seem to have so many more problems than most around here.  I'm so sorry for you, sweetie!  You've always been here for all of us, and it is so frustrating to not be able to give you advice or do something to help you. 

Tracy,

You poor thing.  I can't remember; did you say you had never tried senna?  I know it's not a great thing to take, but it almost always worked for me.  I had colon inertia, but even with my pelvic floor problems and rectocele, it would certainly help get things moving.  What about an enema?  Since surgery I feel like my colon inertia is better, and an enema really helps move things out.  I don't take them often, only have about 4 times in the past 4 months, but when I'm miserable it does help.

I'm so afraid to say this, but the last couple days have been better.  We went to Outback last night and had a small steak, potato and bread, then a couple oreos and ice cream.   I know....I was on a roll!  Anyway, around 11:00 last night I felt like I had to go and it took a couple hours, but I got some quite a bit out.  I didn't feel empty, but got enough out to not feel miserable.  This morning I did an enema and it cleaned the rest out.  Today I've gone several times, so the pressure is good.  Even if I have liquid stools, like I have today, it's better than not going at all.

One thing I've noticed is that the days I'm home and running around active, I feel much better than the days I work and sit at my desk.  It's like moving really gets things going.   I was walking alot, but it's so hot in Florida now I stopped.  We live in a condo and have a exercise room, so I think I'm going to start walking on the treadmill again. 

I got the book "Why Can't I go" by Chris Lahr.  I think you're the one who mentioned it.  It's a great book, and definitely explains exactly what's going on with us.  Did you try to get in touch with him?  Several years ago he had a great website with questions/answers as well as message board.  I always thought I'd go to him if I decided on surgery, but then found my doctor at the Colon and Rectal Center in Orlando.  He does seem to be an expert in his field, though.

I hope you get some relief tonight...I do know all too well how you feel.  It's the worst feeling I think I've had with all this constipation crap (no pun intended!).  Having it just sit there and not be able to get it out is horrible.  I'm so sorry for you.  I hope you can make a decision about surgery and move on with your life.  I honestly can't imagine a bag being worse than the pressure of a rectum full of crap all the time.

 

Janie, no I have not called Dr. Lahr because I am scared and don't know what to say. But on his website it has his home, cell, and work number...I never called a doctor that I have never seen before though. I am a chicken when it comes to certain things. If I ever get up the nerve to call him, I may travel to Mississippi to see him and have all my tests ran through him, except for the transit marker test, and I could just do that one here before I go. My husband is begging me to call him...my stomach is so swollen and my husband is worried about it. It is really very bloated and looks funny. Just a while ago I was smoking a cigarette out of the bathroom window and me and him were just talking about what I can do to poop. I said, "I can't believe I am talking to you about me pooping"! He said, "I think you need to get the bag and forget all this nonsense". This is not how I envisioned my life at 39 years old...the thought of a bag, just a year ago, was totally not even a consideration of mine. Now it is looking better and better.

Lizzie, I'm sorry to hear that you are having problems! It sure doesn't sound fun and you must be so frustrated! Is he the only doctor in the pratice.. seems like there must be another one on call that you could see. Maybe another doctor would have a different way of thinking...

Jen, good luck with your appointment today!

Janie, that was some dinner!! (yum!) It's good to hear you reporting back that you are doing a bit better the last few days. Hope it continues! You mentioned " Since surgery I feel like my colon inertia is better" did you have your entire large colon removed or just part? Glad you mentioned the book Tracey recommended - I'm going to look for it!

Tracey, you poor girl.. you're really suffering! Senna and dulcolax.. they just never worked for me. I'd have to take A LOT - and then I'd end up with diarrhea and cramps. My Gastro Dr. said they are the worse thing to take as it really can stop your colon from working. He said it was safer to take more MiraLax.. or to use the Fleet LIQUID glycerin suppositories. Have you ever used the liquid Fleet (4 in a box). I discovered them a couple years ago - and they really, really work for me. I sometimes need to take 2, but in almost always I am able to have a BM.

So, one more week to I see the new doctor - the colorectal surgeon. All things are going through my mind.. as I really have NO idea what he will say.. or even if he will want to do surgery or try and take a conservative route instead. I just don't want to sit on the toilet straining and straining. I really think this is "part" of the reason I have the redundant, twisted colon and what caused my rectocele to get larger and larger - years of constipation and straining!

Well, I just wanted to drop in and say hello!

Oh my goodness, I bought the book on amazon used for 34.99!!!  Be sure to check the used books...but I did see the ridiculous price, although the back of the book shows that new it sells for $39.60.  I don't understand where these prices are coming from!

 

I had my total colon removed 4 months ago.  Before surgery the only laxative that worked for me was senokot....I took alot, but 90% of the time it worked, although it would take severall hours to get everything out.  I had to plan a "poop" day every few days when I took it.

 

Before surgery, enemas NEVER worked, neither did suppositories, unless I used them to get things started after taking the senokot.  My colon was completely dead....I had 3 sitz marker tests, and no markers ever made it to my rectum in any test.  It was pretty bad.

 

I start biofeedback again in a couple weeks.  The past few days have been better.  I don't regret the surgery at all; at least now when I feel like I have to go, I can drink grape juice, prune juice or take an enema to get things moving.  None of this helped before!

 

Good luck with your new doctor.  Be sure to keep us posted!!

 

Janie

Janie, I have only had 1 sitz marker test and on day 5, 15 were still in the ascending colon and the rest were in the transverse colon. My doctor said that is pretty significant.

Hodaya, is the hydrotherapy painful? Is it also called colonics? Do they suck all the water and poop out?

Tinker, I think he may have 2 books or something. I got mine on amazon used for like 20 bucks. Keep looking because it is a great book.

Jen, good luck today. I am hoping the doctor listens to you and has some suggestions.

Jen,

Happy to hear that you felt comfortable with the appointment and that he is suggesting a second opinion. I wish you the best in these appointments. When are you going to have the appointments? I hope that you can find peace with this surgery. It is a bug and scary surgery, but you will live with much better quality. Keep us posted.

Hodaya, it was awful....I am glad finally someone could see how it hides in my body. They are not sure why this happens, but I am just hoping that my test next Friday in Cleveland will confirm that I am ok to be reversed. My skin has a yeast infection and is still burned....but it is improving. I had a very formed bowel movement last night and still having constant urges to go.....

To Janie and Tracy- I feel bad that I express how much I dislike having a bag....I was in your boat thinking maybe it was what I needed to do....I was ok with it the day of surgery, but emotionally it is a big adjustment. You will fel better and most likely will not have the complications I have had...I am truly just full of complications all the time. And who knows...maybe with some rest and partial removal of your rectum you will be a candidate for a reversal. Also, the issue may be in your rectum and then you are still candiates for J and K pouches if the bag becomes something you do knot want to deal with for life. I highly recommend you both getting second, third, fourth opinions and seeing a surgeon that truly specializes in pelvic floor dysfunction. I have been told so many different things, but the last doctor I saw knew her shi%! and I could tell right away....I felt comfortable and at ease....with whatever may have come of that appt I knew I was seeing the best person I could for what I was dealing with.

Tinkerbell- Definately keep us posted.....I hope that the doctor gives you the answers you need for peace and the start to your life without chronic constipation and pain...you deserve it....all of you do.

I wish my like with and ileo was easier and I thank you all for you kind words....I just hate living loking down, looking for stool, and waiting for a mess....I just want my life back. I have gained 4 kbs now though...I am up to 104-105. I feel good at this weight and do not want to gain anymore....I just hope I do not lose like crazy again if I have surgery. Love you all.

Lizzie

o.k you guys.. i'm SOOOOOO excited to tell you all that i spoke to the psych just a while ago and.... he said i'm approved to go to the surgeon!!!!!! GOSH i'm so excited and i just can't believe he actually said that, i mean he totally surprised me, i really didn't expect to hear him say that. i just feel so happy it's finally happening.

i'm gonna try to make an early appt, cause you know, i really want to do it while it's still summer b/c of my lungs.

tinkerbell, it's true, the yrs of constipation is what's causing our colons to be so loopy and our rectums to drop. the extremely larg amount of stools that accumulates in a colon that cannot contain it, causes the colon to strech and therefore become redundent and the mass of it on the pelvic + the straining causes the rectal prolapse and rectocele. and all together, there's also damage to the innervation of the rectum.

i'm sure your drs will help you to make a decision you'll be at peace with. i wish you all the best, waiting for your update.

i wish i could also get that book, maybe my sister who lives in San Diago can send it to me. is it a real thick book?

Janie, you're in my thoughts and prayers and i hope things get better for you soon. i'm glad you don't regret the surgery and things are better now than before.

Tracy, yes, it is also called colonics. it's not painful at all, maybe only a bit uncomfortable, but really not to bad. they sure suck all the water and poop out. it's a 1 hr treatment in which they fill the colon with the water then suck it out along with the poop, then repeate it for 3-4 times during this hr. most therapists like to leave at the end of the treatment a moderate amount of water in order to keep things flowing, like not to leave it too dry in there. don't worry, this insignificant amount of water won't bother you. it's better to leave it a bit wet in there. but maybe you should ask them to leave like half of what they leave with other ppl.

these treatments are quite expensive, but in your case it'll be worth it. but whatever they tell you, don't let them convince you to go on a treatment program, like doing it every week for a while then once a month. it's bull don't do it. they managed to fool me about 2 and half yrs ago and sucked a lot of money out of me too along with the poo.

but i must say, after a treatment you feel really cleaned out.

Jen, it's great that the markers went through the smalls quickly, it's definitly a good sign for you. getting a second opinion and even a third is always good. i hope you're able to make a decision and be at peace with it.

Lizzie, how are you doing? are you better now?

Marisa, hope you're o.k.

boy.... i just can't wait to see the surgeon!!

hey Lizzie, i didn't see your post. i'm SO praying that you're o.k to be reversed. i just so want you to finally find the relief you need. you've been going with complications for too long already, it's about time you get some rest and relief from all this mess!

let us know how it went on friday, love you!

YEAH HODAYA!!!!! SOOOOOOOO HAPPY FOR YOU!!!!! I am so happy that thinga are finally moving forward for you. I do agree that you should have a repeat defecography just to be sure everything will work out in the end :) I wish you the best and cannot wait until you get a surgery date!!!

Tracy- I am not sure what started all of my problems....I have had continued complications following both surgeries. My TC was successful for three months and then things just stopped. Biofeedback and botox did not help at all....I was back to the old me and was sick as ever. The ileostomy has changed everything for me....I did not know what it felt like to feel like I had to "go" and I had not felt this in years.....I wish I had the answer to my issues. Every doctor told me I am  huge "question mark"......I just hope that you can get relief....I do know that when I had the open exploratory before they went ahead with ileo there was nothing esides my rectum causing the obstruction (no adhesions or scar tissue). I truly believe it was my rectum and I cannot explain why things have changed....

Lizzie

i believe that with faith and prayers things can change for the better. so don't lose hope Lizzie and Tracy and Janie... and everyone else. we have our father in heaven and he loves us all and you know, it's like if you ask your dad to buy you a toy, and he sais no, and you start begging and pleading him more and more, asking soooooooo nicely, then he may finally give in and buy us this toy. so don't give up with the prayers, cause eventually they'll be answered!

Tinker I also had major birth trauma with kid #1 and kid #2. My 1st son weighed 9lbs. 2 oz. and was almost dead when they pulled him out with forceps and a vacuum. I ripped all the way to my rectum. Then, my 2nd son weighed 10lbs. 13 oz. He was huge. I had to stay in the hospital for a week due to inability to urinate and such damage that I had to have surgery to repair the tear. Did I have a c section with 3 and 4? NO! I was not offered this alternative birth. Kid #3 was 8lbs. 12 oz. and kid 4 was 9lbs. 8 oz. and she tore my rectum horribly. I think this is why I am having such a hard time now. If I could go back, I would have all 4 c section.

Hi All,

Once again I can't get Hodaya's posts so I don't know what's happening with her, will someone let me know?  I have no idea why her posts won't show up on my computer.

I've been off my c diff antibiotic for 9 days after being on it for 2 mos and thought YAY it was finally gone; well, I was wrong, the diarrhea has started back in full force today and I tried to talk my GI dr into calling in another script but at $8,000. a pop he is making me come to see him tomorrow so I'm off for yet another 3 hour road trip and another scope - lucky me- :( please keep me in your prayers.  Maybe you should keep my dear husband in your prayers as this isn't that big of a deal to me because I'm used to something being wrong but I really don't know how much this poor guy can take; I feel so bad for him.

I wish you all the best and always in my prayers,

Judy