Total Colectomy Part 34

Butterfly,

It was under these identical circumstances that Lizzie was FLOWN to Cleveland clinic. Her abdomen was severely distended and nothing was passing. Call Cleveland Clinic again about your case tonight. Ask that the night on-call colorectal surgeon call you back. Tell him how long it has been since you passed anything and how you are feeling. Do you live anywhere near Cleveland CLinic?

If you do, then tell the on-call from there that you are going to your local ER to arrange transport to Cleveland. Tell him you need attention before you have a bowel rupture. Then it's on their heads if you do.

Cleveland is supposed to be the best gut hospital around. From what I have heard on here, they are SLOW to recognize real trouble and SLOW to respond.

Good LUck, Rosemary

Rosemay, i tried grape juice and unfortunatley it does nothing for me. i used to eat sugar free chocolate for a while and it helped a lot then it stopped. after about 2 mons i tried it again and still didn't work. Lori, they def don't teach them about CI in med school. i hope you feel better soon. Tracy, how are you? you're right, i also learned at some point that i shouldn't tell ppl i have constipation, but an obstructed guts, which exactly what it is.

Hi i've been reading through this thread as Tracey directed me over here. My little girl is 8 years old and has chronic constipation, a year ago she had an ACE procedure but this just isn't working she is still requiring phosphate enema's amd manuel evacuations in theatre. She is due to have botox next week and i was wondering if any of you have tried this ?????? It is heart breaking to watch her going through this and we are desperate for answers. Thanks for reading.

Hi everybody.  I just got a call from a doctor that works with Dr. Wexner at Cleveland Clinic.  He asked a bunch of questions and then told me that I needed to go on a liquid diet.  So, hear comes my husband, on his scooter and to my office, to deliver all kinds of protein drinks to me!  He's a dear, but it's almost funny.  I have to laugh.

The surgery scheduler for Dr. Wexner is going to talk with him and see if maybe we can move my surgery up to June 8th, instead of July 14th.  I will be so very thankful if they can. 

Rosemary, I live in Tallahassee, Florida and have about an 8 1/2 hour drive to get to Cleveland Clinic. 

My mom lives in Iowa and I've already bought her a ticket to Ft. Lauderdale for July, but maybe they'll switch it to June and make me pay a small fee.  I'm going to try anyhow, if this happens.  I'll even buy her another ticket if I have to, just so that I don't have to go thru all of this cramping anymore.

I love you all.  Please say a prayer for me that I can have an earlier surgery.  This waiting is torture.  I have family coming May 22 - June 2nd, so June 8th would be perfect.. And just maybe, I  could wear shorts this summer.  I always keep my legs covered because of this awful tube velcroed to be, but there is a whole another life out there that I'm wishing for.

butterfly

Checking in . . . As always I am keeping up with your conditions and the goings on and praying for each of you. 

Lizzie - Bless your heart.  As if going through all you are physically isn't enough, you have this emotional slap in the face.  Hon, just focus on tomorrow and healing thereafter.

Amanda - Congratulations on finishing school and enjoy your week of Amanda (know that Seinfeld episode well). 

Welcome Roxanedaz and Debbie.  You will find a wealth of knowledge here - everybody is very helpful.  Unfortunately, I'm still a relative newbie and can't offer much information but do offer compassion and prayers.

Gilda - What is the name of the CD you are listening to?  It sounds perfect for me.

Still waiting for my consultation on the 20th.  Seems like I'm never going to get off step one. 

I'm on Facebook - Valda Steiber.

(((hugs)))

val

MY GOSH Tracy!!!! i didn't think you'll have surgery scheduled already!!! did i understood right? i mean is he going to fix the intussecption and rectocele and do a resection? how long will you have to be with the loop ileo before reconnected? if the outlet is fixed, then maybe you would do good with the help of miralax. unfortunately, for me it seems it doestn't do anything at all.... im so confused that it's not helping me like it does all of you, it's just weird.. i'm really excited for you and i hope this will be the answer for you :) you're in my prayers dear! Lori, that's great news love! will pray for you!

hi debbie, (((hugs))) i'm so so sorry your daughter is going through all of this and in such a young age. i had perfectly healthy digestive system till the age of 20, that's when it all of the sudden happened that my bowels quit working. but i can't imagine going through this at such a young age. i never had botox injenctions, so i can't answer you on this one. i hope she gets the help she needs.

Ughhh. Why oh why didn't I stick with Cleveland Clinic? I went to the one here in Florida and Dr. Weiss scheduled me tests. I took them but my surgeon here near Tampa kept saying I should go to University of South Florida instead. So I broke down and went there. Took all the test results CC ordered. Do ya'll know the docs at USF had the nerve to tell me to go home and they will call me? They wanted to review the test results. Which made sense. But after a month went by I started to get anxious. It has been two months and I have heard NOTHING. Finally made an appointment on my own to go back and I can't get in until the end of June.

I went to CC five times to talk to the docs there. And I had no troubles getting in. His schedule seemed to be pretty open because the longest I had to wait is a week. But financially, the drive back and fourth was killing me. Realisticlly, there is no way I could have kept going. Which is one reason I caved and went to USF. Tampa is only 45 minutes from me.

Meanwhile my bowel habit are back to the way they were BEFORE my subtotal/J Pouch. I can barely go. I can feel all the stool at the rectum but no matter how hard I push only a small bit will come out. I have bad stomach cramps, bloating, gas and I just plain feel tired and run down.

My surgeon here suggested botox shots a while back. But I don't know. Is it painful? How long do the shots last?

Oh yeah, I told him I was very upset about the rectocele coming back, that I thought the sacralcolopopexy fixed that...he said, I will get a rectocele again and again because straining at stool creates them...

Butterfly, the reason I refused to have the botox injection awake was because in 2006, the urogyn thought I was having pain in my vaginal cuff from the hysterectomy. He talked me into having a shot directly into the vagina, AWAKE. Well, it hurt so bad I thought I would pass out. It was excruciating pain, pain I don't ever want to feel again.

And as it turned out, the pain was not my vaginal cuff, it was the bladder sling I had installed had eroded through the urethra and caused a fistula.

So, when my doctor mentioned doing the botox, in office, with me awake....I said HECK NO! That is barbaric and I ain't doing it. He thought it was hilarious and then offered to do it at the surgery center with me asleep.

Lizzie, worried about you, i hope surgery went well. WOW Tracy! i too can't believe you're finally there! it's been a long road for you! yes, it's def about time you did it! and i'm SO SO HAPPY FOR YOU, GIRLFRIEND!!! honey, we can NEVER be tired of you!!!! don't EVER EVER think that, k?? if anyone can understand and identify it's us! gosh i really hope this works for you. gotta be positive this will change your life for the better, cause really, if miralax works for you, then you really have a chance this will work good with the help of miralax, not like me, miralax does nothing for me. after trying the miralax for a week, i'm now more convinced that a stoma will be better for me, cause even miralax (which i had such big hopes about ) does nothing for me...... :((  i mean, how can it be???? it's just too weird!!!! i'm trying to adjust to the idea of pooping through a stoma, but i'm not happy about it :((( i know, i also said that as long as i have to strain so hard with each bm, the rectocele will always be back. as i said, prior to STARR i had a 2.5 cm rectocele (+ major intusseption - i used to call it internal prolapse, cause i didn't know the word of it in english), anyways, after the STARR i didn't have any rectocele at all, 6 mons later the defogram showed 1/2 cm rectocele, which is nodthing and now 3 yrs later the rectocele grew into 2 cm!!!!!! i feel it with every bm and feel very uncomfortable in my vagina hrs after the bm :((   i just feel my pelvic is collapsing more and more, THAT'S WHY i think i should do the bag as soon as posible! i mean i go to the b/r like 5/day and i strain so hard with all my might only to have a tiny bit out with every bm, i mean i strain enough to give birth, and i do it on a DAILY BASIS!!!!! it won't be long till my whole pelvic is a mess and even worse than ever, cause my bladder will be needing to be lifted too, and i SURE DON'T want to get to that!!!!!!  my brain is drained from pooping thinking.... LOL  mmmm well not really funny :(( Lori, June 11.... that's the BEST news honey!!!!!! so happy for you :))))) taurus, i feel your pain!! i have a friend at work that sais she goes 3-5/day to the b/r and each time it's A LOT! and she HAS A COLON!!! it's just not fair, isn't it?? and she's not the only one... there are so many ppl WITH colons that go more than us there's something i didn't quite understand, you say you still have your rectum, but you also mentioned something about you having a j pouch??? that's confusing, cause they don't do a j pouch for those who can keep their rectum. how much cm of rectum do you have left? what you said about the ganglion cells, you mean you have hirshprug's? what's the next step for you? do your drs have some ideas of what to do? i so understand your frustration and disappointment, i'm also very disappointed my colectomy isn't working. i think i'll go for the bag.

oh taurus, i know, the waithing is the worst. they never took any biopsies from me. i guess they saw something in your manometry test that made them think they should check the cells? if in the manometry test the nerves are not responding right (don't remember at the moment how exactly it is called), then it's indicative of HD. mine was normal, so they didn't see any need to check for those cells. what's it like to live with an ostomy..??? i'm considering it very seriously now, cause nothing helps me go. can you describe life with an ostomy? how does it feel to have a bag hung out from your abd? you know, i've been thinking of it for a while now and just this morning when i woke up i thought it's nice to have my body free they way it is, but to think i would now have a bag of poo hung on me..... i don't know :(( i'm just so scared i won't be able to handle this emotionally and physically. i hope things work out for you, pls keep us posted.

Hi everyone.

My surgeon’s office called to move my surgery date up to May 24th!! I would love to just get it done again.. but I had to decline as I just had foot surgery a couple days ago, but mainly – because we are going on a vacation in June and I can reschedule it. So… I’ll wait till July 26th as originally planned.

Gilda, glad you are feeling good and I hope your recovery continues to progress! It’s a good sign that food is starting to become interesting again.

Butterfly, you are blessed with a wonderful hubby always helping you! I’m soooo happy that they will be able to do your surgery sooner! I’ll be away in June, but checking in.. know that you’ll be in my thoughts and prayers!

Taurus, Dr. Marcet is suppose to be one of the best at USF. My surgeon was from there, (his partner in the practice) and I’m sure he was good, (didn’t have much of a personality – not very friendly) but I’ve had issues now where I need another surgery because of my last surgery… don’t really know if it was because something was done wrong or it just happened.. but I’m frustrated!

Tracy, oh my gosh girl.. you have a date! Honestly, I think the plan sounds perfect! Really, my thoughts are at least try and take out the part of colon that is causing issues and see if you can manage the CI with MiraLax. So far, I am … I do think if I had a n x-ray, it would show a colon full of stool, I can feel my colon filled through my stomach (can anyone else?) Anyway Tracy, the rectopexy will secure the rectum back into place and removing the excess will help. I don’t always have a sensation to poo, even though it is right there… but I think that has some to do with nerve damage. We can always go back and have the colon removed if things don’t work, but so many here have so many issues after the colon is all removed, I feel like I have nothing to lose this way.

Lizzie, hope everything went well.. and hope someone will be able to update us on you. You are so in my thoughts and prayers! You’ve been through so much and your so young!

Hodaya, I don’t understand the constipation with the Miralax either, it’s indigestible, and for it not to work without a colon, just says something is not right! That stuff should be making you run to the bathroom! I too always called what I had an internal rectal prolapse.. my last appointment the surgeon told me to try not to strain as I will undo everything that may still be holding, I had to tell him it was impossible, I can’t go without straining – it just won’t come out on its own. He did tell me not to wait to have the surgery as it will progress… same as you. I think I’m afraid… someday my pelvic floor will no longer work.. and either I’ll be incontinent or won’t go at all and end up with a stoma. I hope not, but from reading and researching, it doesn’t sound promising.

So, I have a question I think I asked before and don’t recall anyone replying. I know a few of you have had rectoceles and rectal prolapses… and now I’m back to square one again. I once again have tissue or rectum protruding out of my body when I have a BM. This scares me, and was the reason I finally sought help over 1 year ago! I’ve had 2 rectopexies.. so can it possibly be another rectal prolpase or is the the rectocele!? I know I need to address it my my doctor, but I just wanted to ask my girlfriends here.