TOTAL COLECTOMY PART 30

WOW easy girls, i'm having hard time catching up lol..... anyways... i havn't read ALL the posts but some... Jenise, i hope too that the miralax keeps working for you, but also, it's important to watch your input.. what are you eating? do you have a machine that sqeezes fruits and vegies into juice? if so then some veggies juices can really help, like tomato juice in the morning, also there's a red veggie i think it's called beet or beetroot, it knida dyes everything into red, you know which one i mean? well making a juice out of this one also helps with bms. someone also told me that persimmon juice can help, havn't tried it myself yet though. all of these help me some, but not that much of a difference, but maybe for you it can work better. anyway, just thought i would share this. Tracy, your new screen name is really cool, love it! i know you're not having your rectum removed, we're just discussing options here and i'm totally cool with that. talking about a non relaxing pubo and a good emptying.. in my last defecogram, which was 2 yrs ago, it showed a non relaxing pubo, but the emptying was good!! so maybe ya'll right, cause even so the pubo didn't relax i still had a good emptying. BUT since then it has all changed BIG TIME, it gradually deteriorated and now my empying is not so good at all. that's why i want to have another defecogram, cause i feel i have major issues going on in there. i don't now about the BCIR, it seems to be involved with too many comlications to it, it scared me. Rosemary, that was interesting the info about the anismus... but then what's the difference between rectal inertia and anismus...? it's all still so confusing, isn't it? Lori, was your cystocele and rectocele surgery before the colectomy? i'm so sorry these surgeries caused you all that damage.. good luck with the tests! Sarah, thanks so much for the valuable info about the j pouch! it's very interesting and it makes sense too. i'm too confused right now about what to do. i should have some tests done, that's for sure. i'm really sorry if our talk about the ileostomy offended you or Lori.... we surely had no intention to do so. i guess we're just scared of it b/c it is something we've never experienced before and you know, ppl are usually scared of the unfamiliar. i mean to adjust to a whole new concept of a way of pooping is not easy. it IS a big change in the body, so i hope you can also understand how we feel, cause for us it doesn't seem easy to adjust to such a change... it IS comforting though that you feel good with it. it's encouraging to know that most ostamtes get along with it just fine. if an ileostomy is in my future, i hope i feel as good and comfortable about it as you do about yours. Judy, gosh it sounds so painful and uncomfortable to live with a stent... you're a strong lady, a fighter! and i'm so happy you're able to keep doing what you love, work with children. i hope you'll always will. i hope and pray G-D will keep giving you the strength to go on and never give up and that soon you won't need these stents ever again! much health to you my love! love you everyone.. havn't had much time to catch up on the rest, welcome Kristin!! you've found the best place there is with the most caring bunch of ppl.

Peltzier, Hey! I have a question for you. You seem pretty knowledgable about anismus!

On my defecogram my angles were pretty good...Anorectal angle at rest was 117 decreasing to 102 on squeeze maneuver..On defecation, the anorectal angle was 145, which is GREAT! Why when I pushed and pushed only a tiny amount of the barium would come out do you think> The puborectalis contraction did not even show until the very end of the test and this was after repeated attempts of me pushing and pushing???? I wonder why the barium won't come out when I have great angles???? I am just trying to understand exactly what my problem is because it can't only be from the puborectalis contraction. What could it be????

Anyone else know what their angles were on defecogram?

The end of the report says this...

Impression: Pelvic floor descent with incomplete evacuation of contrast. Only minimal decrease in anorectal angle on squeeze maneuver. The findings could represent some degree of anismus.

See, this report does not even say I DEFINATELY have anismus???? So, why can't I poop?????

I got pretty worried last night as my popping/burning pain because worse as the night went on. I wole up this AM, and it feels much better, but this afternoon, I coughed and had another little pop.. I think I could almost hear it.. but it was not nearly as big as the pop yesterday. I feel fine, and I'm not in any pain, but now my incision above the are that popped has a small lump. I'll be calling my surgeons office in the morning just to chat and make sure it is nothing I need to worry about. My appointment isn't till next week... otherwise I would probably wait.

Hodaya, how are YOU doing? Has your sister been able to send you the supplements yet? just yesterday I started to drink a little more juice.. and I think I may buy some grape juice too - just to try. I still think my whole system is going to be much slower than any one here who had their entire large colon out. I just hope that MiraLax will always work and constipation doesn't rear it's ugly head again. One thing - I know now that my surgeon knows how constipated I was - because of how he found my entire colon full of golf ball size stool, and the impaction on top of that. I feel if I do have issues down the road.. I'm not starting from square one.

Tracy, none of any of the 3 defecogram reports indicate any of my angles. With the 2nd one - I had great difficulty emptying.. this is the one where the filled me more and into the sigmoid. The other ones, both times, the radiologist said my contracting muscles worked good... did your indicate how much of a pelvic floor descent you had? Only my first one did - pre any surgery - and it was 8 cm.

Judy, you keep shaking that low residual diet into our heads!! I did have a little fresh veggies last night, and was up half the night with bad gas.. so, I'll be listening to you!

Lizzie, hope you were able to rest and get something to stay down today. I can't wait till they find out what is wrong and treat you! This just can't keep going on.

Marisa, I'm having trouble sleeping too. I'd love it if you could come clean MY bathroom!! Sounds like you'd clean it the way I like it to be cleaned!! Hubby is doing his best, and I'm so grateful for him Friday and Sat. he spent several hours taking down all the decorations and cleaning the house.

Sandy, sorry you are having constipation issues! I am trying to figure out how constipation happens after the large colon is removed!! However, you're not the only one.. but it does elude me! From what I *though* I understood, is that food is digested and is liquid as it enters the large colon, as it travels water is removed which causes stool to firm up until it reached the rectum.

Rosemary, stay warm!! It cold enough here in FL and I would hate it any colder! You're heading to warmer weather just in time.. how nice!

Jenise,

WOW an 8 cm pelvic floor descent. Mine was only 3 cm, the norm is 2 cm,....so my pelvic floor did not need to be heightened as I thought. One reviewer said only a 1 cm drop beyond the norm is not in need of surgery. Interesting.

Yeah, call about the popping. Rosemary

Descending small bowel means enterocele which causes a mechanical blockage of the rectum/sigmoid and outlet constipation.
There is also the possibility that your rectum (Tracy) has no sufficient propelling motility. Its strenght for expelling the stools (which is a coordinated move that is directed forward) is decreased. This is what I have/had. I have unccordinated rectal spasms instead. There is no overall decreased strenght/motility but the pushing is not coordinated and directed forward. So there is not enough DIRECTED,COORDINATED strenght to push the stools out. And this is one form of rectal inertia. The other form would be overall drecreased strenght/motility. In this form the rectal contractions are ccordinated and directed forward but they are to weak to push the stools out.

Wow girls, I agree with Hodaya. I have so much to catch up on. Seems like I was just here, but I think I was a couple pages behind!

Hodaya,
I've been thinking about you alot; I know you're having some difficulty and I totally understand how discouraged you are. I feel the same way. The miralax definitely helps, but everything seems to be a challenge....when to take it, when to eat, how to manage to go out and socialize and still eat something. I've been home for 11 days for the holidays and I've tried several combinations of miralax, lomotil, fiber, juice, etc. and I can't find any magic combination. It just seems like it's always difficult and just once I would love to eat without worrying about when my rectum will start hurting; the rectal pressure has come back. It's not as bad as it was, but I still use an enema about once a day in between miralax. I hate having that pressure, it truly is worse for me than the bloating ever was.

Tracy,
My defecograms didn't show any angles, either. The first test before surgery showed relatively good emptying. I don't have the report for the one I took a couple months ago, but I wasn't able to expel the barium as well as the first time. I need to get a copy of my records, but it seems like I can't keep up with copies of all the tests! As far as why you can't poop, who the heck knows? i thought my problem was the colon and that was it. Now I have no colon, and I still have a horrible time going sometimes. I definitely had colon inertia; of 120 markers, 119 were still in my colon. I think the reason I never had rectal pressure before is because the stool never got to my rectum. I think the colon removal solved that problem but now I have a whole new problem. It is so discouraging.

Rosemary,
I bet that cruise is looking better and better with all that cold weather you're having. Like Jenise said, it's COLD here in Florida and I wouldn't want it to be any colder. It was 44 outside a little while ago. I know I'm a wimp but I've lived in Florida for too long! I definitely didn't like cold weather when I lived in VA, and I really don't like it here in Florida. I hope you have a wonderful time on your cruise. You'll have internet access, won't you? I know it's expensive, but whenever we cruise, I set aside money for the internet! I can't go a week without it.

Sandy,
Have you tried miralax? I had total colectomy in March 09, and did great for about 3 months and then things slowed down. I was living on prune juice and grape juice until I tried miralax. It definitely helps. At first it was perfect, but like everything else I've tried, it seems to not work as well after awhile. I'm still much better with it than without it though. It is still amazing to me that we still have toruble going without a colon. I was so worried about diarrhea...what a joke!


Judy,
That stent thing doesn't sounds like much fun at all. You are amazing at how you're able to have such a great attitude! I hope you stay comfortable for awhile and all those kidney stones are gone forever!

Marisa,

How is your pooping now? Are you having to take anything to keep you going? You crack me up; I can relate though, the deal with Lizzie just ticks me off, too. I don't understand why she can't find someone to help her. I saw her tummy and that is just not right. As far as sleeping; I have to take .5 mg of ativan to help me sleep. I started taking it when I started having hot flashes and it helps so much. It's a really small dosage, but works for me. Ask your doctor about something to help you sleep. You need your rest, unless you really have a dirty house!

Jenise,
Glad the miralax works for you. I had to drink a little grape juice last night. I think with the holidays I've been eating more junk food than normal. You know it's crazy; most people say ice cream, salads, fruits, etc. give them diarrhea. For me it's the opposite. Seems like most everything I eat makes me constipated. Salads take a couple days to come out, more than most things.

Since I've been writing this (off and on for over a hour!) I've been to the bathroom 4 times. We went out awhile ago to watch a football game and I had a cup of chicken soup and 2 chicken wings...and then some chocolate when we got home. I drank miralax, and I've been to the bathroom 4 times in the last hour, but all just a little at a time. Is this how you go? I just would love to go a couple times and get it over with, but it seems to be an entire evening of running to the bathroom. It doesn't matter what I eat, this is how it is. I see my Dr. in a few weeks again but I don't know what to tell him. I know he'll say my options are STARR surgery to see if the rectocele is causing my problems, or if I can't stand the way things are, to get an ileostomy. I don't think I'm ready for that yet, but I have to admit sometimes I wish I could try one and see if things would be more normal with one.

Wow, this is long and I know I missed saying hi to alot of people. I'm sure at least a couple more have posted since I started this because I've been writing forever!!

Take care everyone!

Janie

Post Edited (Janiepain) : 1/3/2010 5:37:00 PM (GMT-7)

WHOA Janie, You Floridians.......44 would be AWESOME!!!! Though, this is good for me to know, because Thurs I take the train to Florida to start the cruise. For my two nights in Ft. Lauderdale I packed shorts and a swim suit. I think I will pack slacks. I will already have my winter parka on. Thanks for the weather update.

I have had soooo much gas. Auuuugh! Gas is bad with an ostomy, so little of an opening for it to come out of. Yeah Janie I wouldn't electively have gotten into an ileostomy especially seeing as you are going rectally.. But I do hear you about the timing and so on. With a bag, if all stays functioning internally, you just go about your business and empty it whenever you feel like it Gotta see the glass half full that's what I been telling myself lately.


I will have internet access on the ship.. I too am hooked and couldn't be without it. Stay warm Rosemary

I hope you are all staying warm, it's 6 degrees where I live in NY and I don't even want to guess what the temp is with the wind chill; I guess winter is finally here.  I can't wait, I only have 7 1/2 more years and I can retire and go to Myrtle Beach for a few months each year.  Many people tell me I shouldn't retire at 55 but I'll have 32 years in and I'll just do some tutoring at my own convenience and take vacations whenever I would like!!!  My stent is very uncomfortable once again but it isn't bothering my back like it was before.  I'm going to ask my dr about flector patches, they are like lidocaine patches instead of vicodine because I don't usually take any unless it gets REALLY bad and then I only will take 1/2 of one so I thought maybe the patches might help.  I have them for my knee that was supposed to be replaced 3 summers ago but other surgeries have taken over, so keep your fingers crossed that they might help and he will agree, also that he will continue to let me wait until the summer to fix this kidney tube.

Rosemary-Yes I have been a HUGE success case, but I also suffered horribly for years from stomach issues and pancreatitis and like you had to be my own advocate.  I went from gi dr to gi dr (I've had 6, and 7 urologists and 2 PCP) trying to find out what was wrong with me and even went to the Henry Ford Hospital in Michigan which was over 6 hours away.  That dr thankfully led me to Rochester, NY which is 3 hours away where I have found a fantastic gi, surgeon & urologist. I just kept getting over tested and over medicated (at one point I was taking 17 meds) with no results.  With the drs I have now, they all talk to me personally (I don't talk with their nurse), I have their cell number and can call them at any time.  And yes, I've been accused of being addicted to pain pills and having health issues because my body craves pain pills but I know what is the truth and I also know that my body doesn't show on tests what is really going on on the inside.  I've had 3 drs ask me if I'd be willing to donate my body to medical science because it's truly a miracle how I've survived some of the things I've had for so long especially when tests showed nothing!!!  So this surgery was the first thing that ever worked the right way without complications but I was extremely careful to follow the low residue diet and not do things too soon after surgery.  I did have one complication this year and that was c diff due to a previous dr overmedicating me in which I almost didn't make it.  People without their colon have to be extremely careful with antibiotics and need to take probiotics but this dr didn't listen so now I'm at risk of getting c diff at any time. 

Don't ever be hard on yourself for what could have been or what should have been, we are all given this life to learn and grow from it and you are truly helping so many people.  Many people ask me if I ever ask why me? and I say no because I figure God will lead me to the right drs and he has chosen this path for me to learn and for my drs to learn as they cannot think "in the box" with me and neither can they with you.  They are learning so much from us that will help them to help others, always remember that!!!!

Have a wonderful, relaxing vacation, you surely deserve it! 

I probably won't be on much for awhile as school starts again tomorrow.  Please keep me in your prayers with my health, my union issues at school and the Social Security issues.  You all are always in my prayers and I'm hugging you close to my heart

Love you,

Judy

Judy

Hey all...

Cant keep up....Not feeling well at all again tonight. I have blurry vision, quick heart beat, cramps in my toes, and pain and nausea. My belly is ok because I have barely had anything to eat since friday. Contemplating the ER again, but why? I just cannot  do this anymore. I am in tears if desperation.

Lizzie

Lizzie,

GOD GIRL YOU'RE GOING TO DIE, get to the ER! Your vision and your heart are nothing to fool with. The toe cramps are from potassium depletion. The dizziness I developed when I went through what you are going through never totally went away. Don't let yourself go.

I myself have wicked gastric cramps tonight though everything is passing OK, I am salt and potassium depleted because I didn't eat enough today though I have the ability. I can always tell when I screw up my own electrolytes. You on the other hand are unable to eat.

Just go there, lie down in the waiting room, tell them that you cannot go on and they'll have to do something. The more ER visit records you can produce, the more your surgeon will likely do something for you. If you hold up a handful of records and say you've needed ER admissions for the past 6 days out of 7 then he could be sued for not dealing with you. I KNOW you are weak, but you need to get ANGRY at this point. It will fuel you with the energy that you do not have. I know it's rough, I've done it. BUT you have got to learn to be a thorn in THEIR sides. To make you stop coming, they will come up with something to make you well. They will get after your surgeon. Be a pain to them. I know this sounds like weird advice but getting help in your current situation and my past situation cannot be dealt with rationally. It becomes a fight that you must fight when you are the least able. Reach way down inside of yourself, pull yourself up with all the energy you can muster, and go fight for you. Rosemary

Lizzie,

We know you are fighting (we're just cheering you on so you'll keep fighting!) Go again tonight to the ER to make it the twice in one weekend. Then get copies of all your admissions so you can wave them at your surgeon when you next see him. Get the gastrograffin xray Wed; then ask them a test for the pseudo-obstruction that Peltz was talking about. Your next appt with the surgeon take EVERYONE with you. Arrive with a delegation. Your surgeon needs to see that you are a real person who is part of a family that loves you. He needs to find out what is wrong with you or get you into Dr. Wexner soon.

Have someone help you get a duplicate set of records that you can mail to Lahey. I know record collecting in your present state is difficult. You have to fight for your life AND do paper work. It's not fair but it's the medical battle. It's good that you can have a friend at work hook you up and that you can start an IV on yourself if you have to. (You definitely have the advantage there.) BUT you shouldn't have to do that; someone should be taking care of you.

When the Mayo Clinic told me I was hopeless and told me I just would need to keep using my PEG nutrition tube (which I did not have) and I had been 4 months without food, I actually thought of just letting myself go. However, that was my turning point, that was what made me soooooo FURIOUS and that is what gave me the strength to go on and get the help I needed and deserved. I've since cruised multiple times, circumnavigated the world on the Queen Mary, am working to save others from things they should not be going through, and am making a difference in exposing my 2 original surgeons' "mal" malpractice.

Lizzie, we are all meant to go beyond our battle with the medical community and come out on top. We are meant to succeed. BUT only anger will turn your desperation into productivity. Please get to the ER and make them deal. You are the medical community's responsibility. If you had been hit by a car or had cancer they would be bending over backwards to give you all types of help. You are injured. You qualify for help. The docs are only shunning you because they don't know what to do with you. You are their frustration. But tough, it's their job! They took an oath!

On my last small bowel obstruction at my local ER, prior to getting my lysis and ileostomy in Aug. 07 at Lahey, one of my ER nurses very sarcastically said to me, "You again" as I was wheeled in from the ambulance while vomiting through an NG tube. I muttered, "Yes, me again, and I need YOUR help." She was sent home immediately for saying that to me. I know where you're at though our cases are different. You feel like you're trapped and there's no way out. But, you will get the help you need.

Best wishes, Rosemary

LIZZIE,

I know you're still likely at work, but wanted to add something to the above post.

There is a complication of taking down an ileostomy and making an ileal-pouch anal anastomosis. I know you do not have this inner pouch and just had the take down with ileorectal anastomosis, but the complication for the pouch is something called "ileostomy twist." If you google ileostomy twist there's an article written by the colorectal doctors at Lahey Clinic! They say it's an avoidable complication. So if you turn out to have a twist of a small intestine from your take down, they would likely be familiar with that.

Rosemary

P.S. GOTTA make myself finish packing. For some reason I am postponing. I don't know why.

Janie,

i have had my entire large bowel removed..I had two resections before wich left my colon with 20cm..still horrible constipation and bowel spasms, rectal spasms and dysmotility. Then I got an ileostomy in my third surgery where they removed the rest of the colon, too. It was grossly dilated and hardly supplied with blood, it was nearly dead.

My rectum probably has rectal inertia. I had horrible rectal spasms and I could not expel even liuids/enemas or gas. Nothing. Absolutely nothing without manual manipulation and a rectal tube. But even then I had almost no success.
Now my colorectal doc I still go to to for sucking the mucus out of the rectal stump (I can't expel due to the rectal dysmotility) notices that my spincter becomes more and mroe spastic. What a surprise, my whole rectum like my colon before, too, acts with spasms.