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TOTAL COLECTOMY PART 28

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Posted Yesterday 5:59 AM (GMT 0)
Lizzie,

Why are you throwing up? Do you need a small bowel follow-through to rule out small bowel obstruction? Or is the vomiting part of this new strain of flu you have. I don't mean to be blunt, but you have been sick to your stomach quite a bit. I feel for you.

Went to the first half of my 35th high school reunion which I didn't think I'd make while I was looking for help before finding my adhesion lysis and ileosotmy surgeon, but there I was looking totally normal in all the pictures. A few people I told of my experience could not believe I was there and doing so well for all I'd been through. This was our informal gathering at a club tonight.

Tomorrow night is our formal dinner at a restaurant. I need to bring some stuff and be careful what I eat, but all should go OK. All the former high school cliques of 35 years ago now mingle so well now that we are adults. It is hard to imagine being so competitive with eachother or so catty to one another when we were in our teens. If only we could go back with the knowledge we have now knowing no one of us is better than the other, we are all human beings under the skin. All equals.

I have been drowning my sorrows in chocolate and feel gassy. I have to stop doing that because it gets me no where except gassy. I need to stop seeking comfort in the wrong things. Sugar is never a good idea if you have an ostomy.....trust me; gas behind a stoma is not worth anything. I really miss being with people (when I'm not on tour that is) and figure if I stay OK, after I finish the travel I want to do, I should just go back to work doing something. It felt sooooo good to be back with people tonight.

Lizzie, if you lose your job there will be another for you. Jobs can be replaced. Bodies cannot. Take care of your body.

Take care, Rosemary
Posted Yesterday 5:55 PM (GMT 0)
Rosemary, oh my gooosh!! thanks so much for the info on marshmellows and gummy candies!! i had no idea they slow down things!! well no more of those, that's for sure!! oh but i so LOVE'M. but i think i'm gonna have to cut on the sugar and sweets my self. awww, i totally understand your frustration, honey... it's really devestating to know that the condition you're in now could have been avoided.... to find out after it is done, that it could have been prevented. i can't imagine how devestated you must feel. i hope that maybe at least winning the case will give you some satisfaction of at least knowing that maybe there's a chance that thanks to you, these two won't be able to hurt any more ppl. i know you can't help feeling gloomy about this, and i truly can't blame you. i just hope that some day you'll find the way to regain your happiness, and be as happy person as can be, despite all you've gone through. i'm actually very frustrated with my former internist, who claimed for YEARS that my constipation was only emotional, which of course was not, and i know for a fact that if i had the surgery at least 4-5 yrs ealier, i just KNOW i would have had such greater results, lot better than i have now. it's very frustrating and depressing etc.. im actually sheding tears as i'm writing this to you.. but WHAT can i do about it...??? gosh, all i've learned is that drs are not to be trusted too much if at all.... i hope you manage to put things behind you just for tonight, so you can enjoy meeting with your old friends, it should be fun and i hope you have the best of time, my dear... have a blast!!!!
Posted Yesterday 6:30 PM (GMT 0)
Thanks Hodaya,

My atty is one of the best and he is swamped. Therefore he has no time for normal courtesy. I do understand this and I am able to let this go. But along with learning after the fact through 3 years of medical education (gotten the hard way) that all this could have been avoided, I'm additionally dealing with an atty who is very abrupt!!!! (But think how goooood he will be when it comes to grilling the defense :-) :-) :-). I just finished my 21 page testimony, all facts and chronology. I am going to send it off to him. He said don't sit around as these cases take years. Hence the planned trip to South America. So with my typed testimony, if he needs it while I'm gone, he will have it.

I'm of course not as familiar with all the technical aspects of your case, but I gather you have learned enough to know that you lost precious time when your repair, if done earlier, could have given you better results. You are in somewhat similar situation as me. Too much learned after the fact, like in retrospect. It is hard for us to put ourselves back in time to when we did not know. Some mornings I wake up in a nightmare thinking if I knew my sigmoid colon was just fine, why the h--- did I let anyone take it out. Then I wake up and in the conscious mind I realize I did not know that AT THE TIME. One of my friends has been great about reminding me I was making a decision based on the information I had from 3 colorectal surgeons "AT THE TIME."

There is this great book called The Wall of Silence. It is about medical errors made by docs and covered up by other docs even to the expense of letting patients die. There is a quote in there that I will look up later and post to you when I have more time. But the gist of it is that it sabotoges the patient's reasoning process when they make surgical decisions based on wrong information fed to them. In other words, given the correct info at the time, the patient would have made the correct decision.

Well, am going to go mail this off to the atty. Then my part will be officially done. Then can get my head on the party tonight.

My surgeon who saved my life with the needed ileo is of course "my hero." However, no matter how good, surgeons simply don't know all the ins and outs of the after effects of what they do to save you. For example, I talked to a 75-year-old ileostomate who is a real fire cracker. She told me mashed potatoes are very likely to give you a stomal clog where as baked are not so likely. I tried the baked and she is right. The surgeon also of course did not know to warn me about marshmallows, I only learned of that on ostomyland.com after I'd had trouble after eating a marshmallow. So the people dealing with the ostomies (or other conditions) themselves are really the experts. It takes a collaborative effort; good surgeons, good follow-up, and plenty of contact with people in the same situation.

Face Book is fun, I'll work on some of those pics. People said at our informal gathering last night I look the best I have in years. Of Course they only saw me dressed :-) Rosemary
Posted Yesterday 6:35 PM (GMT 0)
Judy, so sorry for all the grief the social security are giving you. love you so much honey and hope it works out for you soon! ((((hugs)))) Lizzie, i hate to hear you're vomiting again.. did you vomit too while you had the ileostomy? i hope you feel better soon hon! Marisa, good luck with your dr's appt and the tests, keep us updated, i'm so curious what they find. i have to make an appt to the dr myself and discuss my issues. i just hope he takes me seriously and try to help me. i just don't know, but i have the fear that he won't. hope everyone else is well.
Posted Yesterday 6:49 PM (GMT 0)
Rosemary, it's so comforting to talk to someone like you who understands my frustration towards my internist. i hate to feel that way and am trying to regain my faith in drs and medicin, but still feel the need to be cautious. it's hard to know who's really on your side and who isn't. you had opinions of several drs and still ended up with a wrong diagnosis.. all i can say is G-D help us, he's the only one that really can, we just have to turn to him with our prayers. hugs and love to you my friend!!
Posted Yesterday 7:31 PM (GMT 0)
Thanks Hodaya,
The thing that baffles me about my medical review is this. In 2009 it finally occurred to me to send the 2006 pre-op defecogram to expert radiologists all over the US and to foreign countries. I found them on google. They all looked at the defecogram DVD and wrote back "This defecogram shows no sigmoidocele but just a loop of descending small intestine." I then by accident sent the same DVD to a colorectal surgeon expert in the US assuming he was a pelvic radiologist too. He rendered same opinion. No sigmoidocele. So this proved that a colorectal surgeon was able to distinguish a sigmoid colon from a loop of small intestine on the defecogram. One did not have to be an expert radiologist to tell the difference from a loop of small intestine and a loop of sigmoid colon.

So then I was left with the idea, if that one colorectal surgeon was able to accurately interpret the DVD of the defecogram, then why could the 3 colorectal surgeons I saw prior to the 2006 surgery not see that I did not have a sigmoidocele? One of those colorectal surgeons I saw in 2006 pre-operatively was a top US colorectal surgeon (unfortunately not the smart one who saved my life after the fact) but this doc is a big cheese at a leading GYN, pelvic surgery hospital in Boston. He has been looking at defecograms for about 35 years!

Was he just into taking out sigmoid colons for dollars or did he honestly not know how to read the defecogram that was done at his very own hospital by his very own radiologists. It blows my mind! I am really onto something big here. It's like putting together the pieces of a puzzle. I would love to be a detective! It's intellectually stimulating to say the least. :-) Rosemary
Posted Yesterday 8:07 PM (GMT 0)
Rosemary, it's scary, cuz it only proves that even the big ones can make fatal mistakes.. there's a reall good colorectal surgeon here in israel, he's considered to be THE number one surgeon here, but you know what, i've heard too many bad stories from ppl who had their surgery with this surgeon, so i decided that i'm not seeing him, cuz him being considered the best in israel isn't always a guarantee to a successful outcome. i'm glad i went to the one i did. he really did a great job. the issues i'm still having are as a result of waiting too many yrs till finally doing the surgery, all this waiting caused further damage to my pelvic floor.
Posted Today 12:26 AM (GMT 0)

Rosemary-I hope you're having a BLAST at your reunion!!!! And I'm sooooooo glad that you are pursuing the lawsuit against your former surgeons.  I too experienced negligent drs but thankfully my husband rushed me to my GI dr and colon surgeon 3 hours away or I too would have had a permanent bag or possibly might not even be here right now.  And when I finally got the chance to speak to the negligent dr the only thing he said was,"How was I supposed to know what happened to you, you left me." I told him that I was misdiagnosed and almost died and he just said "you left me".  Mind you I had almost a half inch sized tube coming from my kidney that he put in and I said as far as he knew it was still in there (5 mos later) because he never followed up  to see what happened to me. I ask how he thought the tube magically got removed and he repeated, you left me.  By then I just said please give me my records because at this point I don't know if I'm going to pursue this case further and I didn't want to say anything that might harm my case. I applaud your persistance and hope and pray that these drs will be unable to continue to harm people.  Many prayers to you:)

Hodaya-Thanks for the kind words:) Things will work the way they are supposed to. Love you too:)

Jen-Hope you are doing well. I forgot to ask my friend about foods for you today so I just text her, I will let you know when she gets back to me. Love and hugs:)

I guess I better go do some ironing so I can decorate my house tomorrow.  I've never decorated this early but with having our Christmas in 2 weeks I need to get things done, at least most of my shopping is done. We bought a plane ticket for our daughter to come home and a new GPS for her bc she spilled water on her last one and bought our other daughter a computer chair, perfume, bracelet and now just need some gift cards for them.  My husband and I aren't buying for each other, we decided to give to a family in need instead, we have all we need and there are so many others that are hurting financially at this time so we are giving to others.  I hope you all are having fun shopping and are getting things done for the holidays.  I might even bake for the first time in years lol but that might be pushing it - I don't know if I want to stand too long on my feet bc then my stent really hurts but my girls really like pb balls and sugar cookies - so maybe...

I wish you all happiness, joy, health and peace throughout this season.

Love and hugs,

Judy

Posted Today 1:38 AM (GMT 0)
Just checking in. I had a bad day yesterday but today I have done very well. Today is my daughter's 9th birthday so I'm glad I wasn't in bed all day like yesterday. My husband has been such as saint through all this. He got up and cleaned the house because he had invited a few of Erin's friends over for her birthday. He took them to eat pizza and then to a movie. He did have his sister help him at my suggestion. I told him how difficult it would be to deal with kids needing to go to the restroom etc. He did very well but is tired.....poor thing...I think he appreciates what I do just a little more these days.

I have eaten pretty good today. I need to because I lost another pound from yesterday. I'm eating the best I can but I can only consume so many calories in a day. I'm down to 101....scary...when I look in the mirror I just gasp. My mom took me to the grocery store so I could pick out all the foods I would eat. Tried to get high calorie things so we will see. I am just thankful that I am not having any abdominal pain to speak of..knock on wood.

Rosemary I hope you had fun at your reunion. Also good luck with all your legal issues....I am sure that has been a chore to get all that information gathered. Also thanks for all your support and advice.

Hodaya I hope you can get some relief from your pelvic floor issues. You are in my prayers every day.

Judy thanks for your advice and encouragment. It really means a lot to me. Sounds like you are on the ball this Christmas. I did all my kids Christmas shopping this afternoon online. I spent several hours just shopping online....I just hope I get everything I ordered. I've never odered this much stuff online before but I have no choice this year. As far a decorating....hmmmm...might be pretty simple this year. A tree might be the extent of it...I hate to keep asking my husband to do so much.

Lizzie I hope you are having a good day.

Jenise like Judy said concentrate on the positive stories. Not everyone has had complications. Even though I have had this one setback I still feel better without a colon.

Thinking about everyone. Hope everyone has had a great Thanksgiving weekend.

Jen
Posted Today 3:59 AM (GMT 0)
Rosemary- Hope your having fun at your reunion!!! I do not know why I am....My surgery was cancelled due to it prior to my reversal and I had a small bowel follow through at that time so just beginning of October and all was ok. My surgeon was concerned before the reversal. I still had horrible nausea today as well with eating. I am just getting concerned about how I feel. I have not felt good since this reversal and I look worse than I did before surgery. I am super pale still and just do not feel good, esp these last few days. I think the laxatives drain my body as well and all these years of laxatives....just get sicker and sicker to my stomach the more I take them. I am really thinking about going back to Cleveland. I wish you guys could see my inscision....its still has a huge hematoma (feels like a golf ball) under it and looks just wrong. Does anyone know how long these can take to heal???

Hodaya- I hope you are doing well sweetie. Miss you and love you.

Jen- Glad you had a better day today. I really think you should try the benecalorie or add some super high calorie protein drinks to your diet. You are close to my weight and i look thin, I cannot imagine you at 101. You can do it....it will just take time. You could add an extra 1100 cal with 3 servings of the benecalorie and its such a small amt. I am glad you are not having any pain. Hope your daughter had a great birthday.

Judy- So good to hear from you....I love reading your posts. Its so true what you say....I do feel so lucky to have all of you and we will get through this eventually. I just want to feel "good" for an entire day and I just want an end in site. Yo uhave been going through so much and I admire your strength. My husband is super positive as well and thinks all will be ok...its just so hard to see it when your going through it....hope your well. Love you always.

Jenise- The days are approaching....I hope you are doing well..it will be here before you know it and you will be on to the world of recovery and feeling better. Its hard to look at the complications, but as Jusy said there are many who have had none and just have come and gone. Even with the mass amt I have had and having a leak and drains and, etc I can look at my signature and gasp at what I have gone through, but would do it over again tomorrow if I had to. I still never regret having the first surgery. We all deserve to feel better and you are going to do great. If you do end up with a temp ostomy well then we will get you though that as well....step by step. Hope you had a great thanksgving.

To everyone else....hope you are well.

Lizzie

 

Posted Today 4:32 AM (GMT 0)
Hello everyone,

Hope you all had a great Thanksgiving.

Jen, SO glad to hear you're home and recouperating. What an ordeal....just take care of yourself now and don't rush things. Sounds like you've got a great husband; so let him help; I'm sure he wants you well fast:)
Judy,
So sorry about all your issues now. You continue to have such a wonderful attitude. I hope you have a wonderful Christmas with your daughters. I wish I had some shopping done, but I am only to the list stage so far. I really need to get moving!

Rosemary,
Hope you're having fun at your reunion. It's funny how over the years all the cliques seem to blend together, isn't it? I found the same thing at my HS reunions. It's also funny how people have changed. It seems like the ones I expected to do really well didn't and some who I didn't expect to do as well were doctors, lawyers, etc.

Jenise
Good luck! I was one of the lucky ones who didn't have any complications with surgery, so it can definitely go smoothly! My doctor was pretty conservative about keeping the NG tube in for several days, but it worked out well, because as soon as I started eating, I was able to eat with no problem. I actually didn't have much pain at all (of course I had good drugs for a few days) but after that it wasn't bad. Most of my pain was from my back and trying to sleep in that horrible hospital bed!! Once I got home (after 8 days) I only took 1/2 pain pill twice at bed time. I hope your surgery goes as smoothly as mine!

Lizzie,
I hope you can find out why you keep throwing up. That just doesn't seem right to me. Have you told your doctors about it? I would definitely give them a call Monday morning, you're just not supposed to be sick everytime you eat. I was so hoping I'd come back and read that you were doing well. Please talk to your doctor, sweetie! What laxative are you having to take every day? If you don't take them, you don't go at all?

Hodaya,
Have you tried miralax yet? I know you don't want to start taking laxatives, but miralax has helped me so much. I was taking it twice a day, but lately I've tried just once and so far I'm doing ok. I guess it just depends on what and how much I eat. On Thanksgiving we went out for dinner and I ate more in one meal than I probably have in 8 months. It was delicious and I did fine...came home and took miralax and went a few times in the afternoon/evening. I don't mind going several times as long as I don't get that rectal pressure. So far, so good. I even went to Sea World last week and ate lunch and had no problem. I didn't eat all the junk I wanted, but I was able to eat lunch at least. Give the miralax a try; you may be surprised at how much better you'll feel!

Marisa, Christy and everyone else, hope you're all having a nice weekend and that you all had a great Thanksgiving.

Janie
Posted Today 6:10 AM (GMT 0)
Hi everyone,

The reunion was super! I danced for about 4 hours. Am exhausted but it was like being on those cruises; I totally forgot all about medical stuff. It was like time was turned back. Some people had seen me when I weighed 99 and I'd told them I was basically being left to die and was scrounging for help..due to the damages from what ended up being unneeded 2006 surgery. They couldn't believe it when I walked into the restaurant back to my normal weight plus 10 lbs. It was like they saw a ghost or something. One girl actually cried. I am a member of what we call "The second chance club." Some class members have won battles with cancer, one girl was hit by a drunk driver and had to have 14 orthopedic surgeries, another one successfully recovered from a brain aneurism rupture and surgery. Mine was so different; no disease; no accident; but instead intentional removal of a sigmoid colon that (when they got in there, the original surgeons must have seen was not elongated) all the other unconsented procedures, no follow-up to complications, and then nobody wanted to deal with all the damage until I found the one doc that did the best possible for me. My near miss was voted the most bizarre and the most frightening. (Just what I always wanted to be famous for....NOT!) Anyway, it was a super time. Thanks for your well wishes.

Judy, I'm sure my original surgeons are going to say "She left us" and my atty can say "Yeah with her colon strictured in to 4 millimeters." I think my defendants are going to have a h--- of a time coming up with ANY plausible response whatsoever. One of their lines will be "She kept jumping from doctor to doctor" Sure, the damages were so severe it took 11 of the nations top docs 13 months to figure out the damages, then most didn't want to deal with "damaged goods." I'm sure there will be a whole lot of bull slinging. Your potential defendants sounded experienced, like they'd maybe done what they did to you before on someone else? My defendants do this twice weekly. I can hardly wait to hear the lines they have down pat. (The other patients or their estates won the other 7 suits though so....I don't really think whatever they say holds much water. SHould be interesting.

Lizzie- I remember your surgeon did a small bowel follow-through prior to your surgery, but I personally think you need one now after their surgery. Just because I am an adhesion former doesn't mean you will be, but you did go through another surgery and that is how they form. Ask your doc. The others are right, vomiting after you eat is not a good sign. Do you feel a wave of nausea and ill all over as in when people have the stomach grip that lasts for a day or so? OR is your vomiting more of a mechanical reaction after food has been in you for awhile? Tell your doc whichever it is. I will hope for all the best for you. You have been through waaaaay too much! (A real simple way to do a preliminary check for a partial small bowel obstruction is to get just a flat plate xray one standing and one lying down. If the air levels are pretty even throughout your small intestine it usually means no problem. But if some bowel loops have a lot of air and some have very little it means there may be a blockage. It's called a step ladder pattern. (Prior to my lysis and ileo surgery I could practically read my own xrays I'd had so many of these partial obstructions.)

Hodaya - Give the Miralax (the Israel equivalent to it) a shot. Back before my disastrous 2006 surgery, just a few sprinkles of the powder in water would really send me the next day. Of course it would be all in divided moves, but each divided move was very easy. I should have just thought oh well, I'll spend the a.m. in the bathroom doing the endless divided moves then work afternoons, but hind sight..... Anyway, just a bit of the powder really eased the rectal emptying.

It's not technically a laxative as in something that stimulates the gut, but it is an osmotic. That just means it draws water into the stool. Sucralose, Sucrose, and all those fake sugars in diet foods do the same thing and going to the bathroom a lot is just a side effect. So it's totally harmless. Had I not been told incorrectly that my sigmoid colon was blocking off my rectum, I would have just "married Miralax." :-)

Jen - Sure hope you're going to be OK. Keep resting. Your husband sounds like a dream. You are a lucky woman.

I brought my own cottage cheese to the reunion for protein. Then I had one tiny red potato without the skin. One table spoon of well cooked squash and a ton of water and one wine. Though I chugged water all the time I was dancing, my effluent was like hard glue coming out of my stoma. Didn't bother me, but I could tell the consistency was so thick I would feel better with it out of me. So when I got home I had grape juice, decaf tea, and some mudpie ice cream, thinned it down and whaled everything out of me while I typed this reply. There was a ton in me. How could anyone manufacture so much poop on the tiny dinner I had? Oh, Well! Totally weird diet secrets but I just do whatever works and makes me feel the best I can. I had a super Thanksgiving and I hope you all did too. I pray everyone on here get straightened out one way or the other and that I stay as well as I can as an ileostomate.

I worked extremely hard on my suit and only now is the actual legal process starting. Could take up to 5 years and the two original surgeons do all these mutli-procedures on women twice per week. So many are being hurt as I try to set things right. But in time, I do believe I will have some effect. Our state medical board is REALLY listening mainly cause I produced copies of all their other suits. I just have to stay well. With so many of the past patients dead, unfortunately we can't get together. I would never have the crass to call their survivors to see if they wanted to get together and take some class action as I feel it would open such old wounds for them. Those alive and trying to get legal help, their names are protected by local attorneys so we can't get together. Only when you file suit does your name and the suit become public information. So......I will press on the best I can to protect those patients yet to come.

Hope and prayers for all of you. Love, Rosemary

Post Edited (esoR) : 11/28/2009 11:16:29 PM (GMT-7)

Posted Today 12:31 PM (GMT 0)
Lizzie it really sounds like you need some tests done. Vomitting after you eat and feeling nauseaus all the time is not good. I am really worried about you. Please get to the doctor and demand some tests to check everything out. Trust me from my own recent experience......do not wait around!

Praying for you.
Jen
Posted Today 2:16 PM (GMT 0)
Lizzie, I am so sorry you are still feeling nauseas and vomiting. That just doesn't seem riight. What laxatives do you take? Because correctol, dulcolax, and exlax make me extremely nauseas, so nauseas that I can NOT function. Even miralax in high quantities makes me nauseas and bloated! It is a miserable feeling. I don't think it is normal if you are already having to take high doses of any laxatives because you don't have a colon????? Do you think it is a functional outlet problem? I mean, is the stool loose, but you just can't get it out without the use of a laxative to "blast" it out? Because miralax makes it very soft and if I take ALOT, even liquidy, but I can't get it out without alot of acrobats! LOL

Jen, it is so good to hear from you. It sounds like you had quite an ordeal and it makes me TERRIFIED to have anymore surgeries! YIKES!

I am doing not so good. I have been very busy with family in town and Thanksgiving and shopping that I have not spent my much needed hours on the toilet. I had a terrible stomachache for 2 days...on the left side and under my belly button. OUCH I have been miserable. So, for the past 2 days I started taking mega doses of miralax and finally today I went some. This is no way to live because I am a slave to the bathroom.

Rosemary, I am glad you had fun at the reunion and even more glad to hear that you are eating more food. That is wonderful and I bet it tastes heavenly. You surely have to be starved for some real food by now, 2 years later.

Judy, that lady had no right to accuse you of anything. What a witch! You deserve to be treated with some respect and did not deserve her cocky attitude. I hope you file a formal complaint against her. :(
Posted Today 2:40 PM (GMT 0)
HI everyone! So much to catch up on!

Jen, I'm so happy you're starting to feel a bit better. I know it must be hard getting all the calories in that you need in order to gain, but it sounds like you are working on it! Doug sounds like he is a wonderful man.. you so lucky! I too will have to boast about my hubby, as he too is just a wonderful nurturer.. and I know that I'm in great hands too. Glad your little girl had a nice birthday party! Now.. I will say my hubby would have a little trouble with a little girl party! LOL We have 3 boys, and 1 girl. He is just a big kid when it comes to the boy things!

Lizzie, the question that comes to mind is.. did you feel better before this reversal? I don't recall you feeling so ill before. I know that your stoma was an issue with your skin, but it doesn't sound good that you are always so nauseous. When are you due for your next appointment? Maybe you need to see your doctor sooner then later.. something could be a little kinked or twisted.. I agree with the others, tests need to be done. Thanks for the well wishes! I'm prepared that I might wake up with a temp ostomy, and you can be sure I'll be here looking for help if I do.

Tracy, I missed saying hello to you! Sounds like you have been miserable! I to get that exact pain when I can't go.. my belly is tender and sore to under my navel and more on the left side. I get bloated as well... It's no way to live.. and I hope that your December appointment brings you to a decision!

Rosemary, wow, sounds like you really had a great time dancing the night away! I'm glad you got all the hard paper work done for your case, now hopefully you can go on your world cruise and relax and enjoy it - like you should! It's awful that a trial should last so many years, but from reading the newspapers, I know that they do. Hopefully, it will cause them time and frustrating trying to defend themselves., and hopefully - word gets out and other patients will think twice about using them.. and they lose money in their greedy pockets! When you good surgeon finally found your stricture.. what test was done that revealed it? A Barium enema? and I wonder why the bad doctors or others - never did the right test to find it. I'm not sure if I have the sigmoidocele or not.. as from what I read, only a defecogram can reveal this, on said yes another said no.. and the barium enema could not see it because of the extremly redundant transverse and sigmoid (and you need to strain to see it according to my research - which I didn't have to do with the BE). In any event, I show no strictures, but the prolapsing colon is obstructing things.

Hodaya (HUGS) try not to be upset with what could have and should have been done. I too often think about my situation.. I wonder if I had only had this fixed sooner if things would have been better. My one doctor - who delivered my last baby, and really put my life on the line.. never even told me I was prolapsed! I mean.. I didn't know. I was young, and just thought I had a very difficult birth, but never realized that all the years of waiting to get repaired was just causing more damage - not only to my pelvic floor - but to my colon. The years and years of constipation is a cause for the redundant, floppy colon. We all just need to move forward.. and you do need to seek out a different doctor who you can trust. Please don't be afraid of the MiraLax.. it is not like using a laxative, it's more like a diet supplement.

Judy, I am focusing on the positives - you being one of them! I have read all the old posts and see most are gone.. living there lives as they should be, so I'm happy you stick around and give this forum a positive vibe.. because honestly, reading all the posts are scary! I'm scared, but I know that I have good doctors and that I'm in good hands and although I have no guarantees.. I'm hopeful! I often have thought if it is a mistake having the surgery.. but I am willing to take the risk in hopes that I can empty my bowels fully and hopefully - without laxatives. I hope you have a wonderful and blessed Christmas with your daughters. Even though we have never met, I know your a wonderful and giving person, and hope God blesses your life in every way. Sorry you have to go through crud of work issues, kidney issues and social security issues.

Janie, thanks for reminding me again that you had no complications either! I'm as healthy as can be for 48, hopefully, that pays off and I sail through without complications. I'm so glad the MiraLax is working for you and that awful rectal pressure is gone. Sounds like your able to go out and enjoy normal things.. and that is my goal! How is your puppy doing? My little boy is 9 months old! I think he finally knows he is suppose to poo outside! He hasn't had a pee accident in months, but likes a bedroom to poo in! It's been weeks since we had an indoor accident.. but he still doesn't tell me he has to go out! I ask and he'll run to the door.

Marisa, good luck Tuesday at the doctors. I know you hate the thought of the dreadful test.. believe me, I wanted to go in with a bag over my head! The one plce relaxed me but saying it is barium.. you're not really pooping! It's true.. and these people do the test weekly - they don't really think anything of it. Many places don't do the test - in my area I have only 2 places.. in two different larger cities. One over an hour away and the other 40 minutes away.

Amey & Christy hope you both enjoyed your Thanksgiving dinner! Thanks for your thoughts and prayers, I so appreciate them!

Ten days from today, I'll be in the OR.. Time is really going by so fast, because I have been busier then usual! I have enjoyed my Thanksgiving dinner and finished some leftovers! I figured it might be a while before I can really enjoy food again so I had more pie than I should have. Yesterday I decorated the who house, I planned on just doing the tree, but hubby was insistent that I do the whole thing (he loves Christmas). We did the outside together and I did the inside.. today I have the tree left to do, and I'll be done. Hubby will be taking it all done and putting it away (which is easier then decorating). I still want to wash my windows and clean the house good before my surgery.. I'll work on that this week. I'm trying to stay out of the stores and crowds so I don't catch the flu or a bad cold before hand.. I'd die if I got sick and they canceled! Mentally - it would just throw me for a loop!

Hope everyone has a great Sunday!
Posted Today 7:49 PM (GMT 0)
Janie, can you eat anything you want/any type of food with the miralax and still have bms and feel good? do you still have to avoid many things? well i guess fresh fruits and veggies will always be a no no, or am i wrong and you can eat those? can you eat pasta? potatoes? dairy? and still feel good? thanks for everyone's concern and advice, i might just break down and start using this normalax, cause i so desperately want to eat real food!! today wasn't a good day for me, i felt so bloated and had bad belly aches all day, still feel that way, i hardly went to the b/r. so depressed :o( if the normalax works forever, then i'm o.k with it for sure!
Posted Today 8:26 PM (GMT 0)
Hodaya,

Things have slowed for me already but fortunately if I drink a lot of water it helps push things through. I also use suppositories to help trigger things a little. If things were to slow to the point that drinking water doesn't help then I will use Miralax. It's really not like using a stimulant laxative and the doctor's here in the US really recommend it over most things. I would give it a try if you are feeling bad. I have an appointment with my surgeon tomorrow so I am going to ask him about using Miralax if things do slow down for me and see what he says. I will let you know if he has any reservations about it without having a colon, but I don't expect him to.

Hope everyone is having a good day.
Jen
Posted 11/30/2009 12:15 AM (GMT 0)
Hi girls, Had a great Thanksgiving with my family. Just had dinner with my parents. Did some shopping and lots of cleaning.

Rosemary, to my understanding the doctor does a colonoscopy to look at the remaining colon, the anastomosis site and part of the small intestine. Since my colon was so bad he wants to make sure that the small intestine is ok.

Jen, I am so happy to hear from you. You have been blessed with a great husband. As I have. We couldnt get through this without them.

I have been going to a new church and it has been so good for me. I actually feel like I have a reason for being here and going through the trials that I do. Faith is such a big part of being ill.

Back to work tomorrow. Work has been very stressful lately. My boss called me in on Wed. well is wife did anyway. So I went in at eight in the morning and saw two patients. Well, the whole time I was there he didnt say one word to me. Not even, hey, thanks for coming in. I was so annoyed. Ever since I came back to work since my surgery he has had a problem with me. I just dont get it. I think I will confront him tomorrow about it. Its hard because we work so close to each other all day and he never talks to me. If it wasnt so hard to find a job these days I would just go somewhere else. Who knows after tomorrow I may have too.

Hope you all have a grand day tomorrow. Love ya
Posted 11/30/2009 12:49 AM (GMT 0)
Hodaya,

I pretty much eat anything I want. I haven't gone much tonight yet, but today I over did it watching football. I ate quesadillas, cheese sticks, then came home and had turkey sandwich, pecan pie and some candy. I was really really bad. I feel ok, but hopefully the miralax will kick in soon. I haven't had problems with fruits, and I've eaten stir fried veggies quite a bit. I haven't had pizza since starting miralax, but that's honestly about the only thing I haven't had. I don't know how long it will last, but it has made a huge difference in how I feel and what I can eat. Try it, if it works it will be so worth it!

Jenise,
My pup is doing fine; she just turned 6 months old. She sorta housebroken; if we take her out, she goes, but she doesn't let us know when she wants to go out. We still have the pee pee pads down, and she still pees some on them, but we usually always get her out to poop. She goes about 3 times a day, and we have the times down pretty well, so not many accidents there. She just plays so hard and drinks alot and pees alot. I'd say we get her out about 80% of the time to pee...but she's little and as long as she uses the pads, I'm ok with that. We live in a condo, and it's not nearly as convenient getting them out to go in a condo than it was in our house. I swore when we moved here that after the dachshunds passed away, I woudn't have another dog, but I missed a pup so much. We have a Maine Coon cat and I love him dearly, but a cat is not a dog!!

I think I need to go, so better run:)

Hugs everyone!!
Posted 11/30/2009 3:02 AM (GMT 0)

Thanks everyone for your concern....I am too and I think I am for sure going to go back to Cleveland and see the colorectal surgeon/pelvic floor specialist. I wonder how the tests would come out if I were to have them repeated since my surgery. I start to feel sick about 10 minutes after eating for about 2 hrs I am nauseated. I do not think its normal and I am 7 weeks post-op. I am not supposed to see my surgeon until February and going to biofeedback twice a week for now and taking MOM or doing enemas twice a day. I had horrible rectal pressure when I woke up this am and could not get the stool out. I took some MOM and have gone just liquid 3 times. It was 14 mo post TC when I had the emergency ileo....but I am trying to think positive this time around and pray that biofeedback will work.

Hodaya- I am so sorry you are still having issues. I know how frustrating it is and I was reading today that the stress build up from all the medical uncertainty can affect so many areas of your life. I think you should try the normolax and see if it gives you any relief. When is your next dr appt? Worried about you little one. Miss you and love you always.

Janie- I am so glad you are doing well on the Miralax and that you have even been able to cut back on the dose. I hope this continues to work well for you. Miralax has never worked well for me, but instead made me very nauseated. I have not found a laxative that doesnt yet though...I am just so happy you do not have the rectal pressure and pain anymore.

Tracy- Good to here from you, but wish you were feeling better. I hope this next appt gives you some answers and clear direction. The pain you get sounds just like the pain I used to get. I feel for you and hope you can make it without waiting too long. I think of you often and pray for things to turn out better for you.

Marisa- Glad you had a good Thanksgiving. I am sorry about the work situation. I think you will feel better of you confront the situation and see how he responds. I am so happy that faith is guiding you through all of this. I really believe it helps and need to do some more of that myself. Let us know how everything goes.....thinking of you.

Jenise- wow 10 days....your going to do fantastic and truly believe you have done everything to prepare that you can and there are those that have NO complications. To answer our question I do believe I felt better wih the bag. I was able to eat more, looked better, weighed more, and just felt healthier. I hate to say or admit that, but besides the skin breakdown and couple obstructions I did ok and felt good for 7 months. I just have not felt well since the reversal and I am not truly sure why or what is going on. I do not want to have anymore surgery and I want to go back to Cleveland and see what they say....maybe they can find out what is going on. Thinking of you over the next 10 days and praying for you.

Christy, Amey, Judy and everyone else....hope you are all well and miss you.

Lizzie

Posted 11/30/2009 3:34 AM (GMT 0)
Lizzie,
Sorry you're feeling so badly honey. I hope CC has some answers for you. It's a shame everything makes you nauseous. My surgeon told me that nausea was one of the possible side effects of surgery, but thank goodness I've never had that problem. Thanks for your kind words about how I'm doing. Miralax has given me my life back. I hope and pray it continues, I can live like this. That rectal pressure was the worst pain I've had I think.

Jenise,
Forget everything I said about my pup being almost trained. She just peed and pooped in the house, and neither on the pee pee pad....so I guess my answer is, NO, she's not housetrained yet:(
Posted 11/30/2009 1:27 PM (GMT 0)
Janie, my little guy is 9 months old. He hasn't had an accident in weeks.. BUT never tells me when he needs to go! I think he has ME trained! He is a lot easier then he was 3 months ago.. I swore I was never getting another dog after our last passed away (4 years ago) He can be a little work and break up my day some...but gee.. I do love the little guy!

Lizzie, I think going back to CC is a good idea! I think waiting till Feb is too long. It may be nothing more then a side effect, but possibly there are things they can do to help. I can't imagine feeling sick and throwing up after every meal! That alone is not healthy.

Yes, my time is speeding by fast! I'm glad.. I'd rather have it go by fast then feeling like forever! I have all my decorating done, and today I'll finish wrapping gifts, and then.. I'll focus on cleaning the house and stocking up on some food items.

Marisa, sorry you too are having issues at work! Seems like employers are not very sympathetic, as Hodaya, Judy and Lizzie all have issues at work too! Glad you found a new church, building your faith and having faith is so important! I have a little picture plaques that I often have to refer too... Faith is not believing God can, but KNOWING God will. Some times we can't understand why things happen, but I always try and remember that God knows what is happening.. and I need to get my hands off the steering wheel and "let God".
Posted 11/30/2009 6:17 PM (GMT 0)

Hi all,

I just got back from the doctor.  He said everything looked good.  I just need to gain weight which is easier said than done.  I also started my period while in the hospital last Saturday.  I was a week early and still have it.  He said if I still had it by the end of this week to call my obgyn.  He thinks it is just the trauma of surgery, hormones, stress, etc.  I guess so but having a perpetual period is unacceptable!  I go back to see him December 29th to make sure everything is still going well. 

My bowels have slowed down. Last week this time I would have gone to the bathroom 4 or 5 times by now.  But so far today nothing.  That is worrisome but he said I can use suppositories or Miralax if things stay slow.  I was so worried about running to the bathroom too much after surgery but looks like that will not be the case.  It's amazing how this happens to us.

I am praying for everyone.  Lizzie I'm so sorry you are so sick after eating.  I hope you get some answers soon so you can feel better.

Jen

Chronic Constipation since December 2000.  Diagnosed with Colonic Inertia in 2009.

October 26, 2009 Total Colectomy with an ileorectal anastomosis.

November 17, 2009 emergency surgery for infection, possible leak at anastomosis site.

 

Posted 11/30/2009 7:20 PM (GMT 0)
Jen,

Sorry to hear of the perptetual period......Good Grief!!!!! Of all the things you don't need. It likely is a hormonal upset. Hope your stool issue normalizes, too. My word you have sooooo much going on. I wish you well.

Jenise,

To my knowledge the defecogram detects sigmoidocele, but then one of my defecogram reviewers said PRIOR to any surgery being done for a sigmoidocele being supposedly detected on a defecogram, a gastrograffin or barium enema should be done to verify redundant sigmoid as was not done PRIOR to my original 2006 sigmoid removal.

WHat detected the stricture from my (unneeded) sigmoid resection was a gastrograffin enema xray which was done AFTER my sigmoid removal (This is equivalent to a barium xray) only I have to avoid barium due to an allergy. It sounds like your docs did ALL the tests needed PRIOR to your surgery and then some. So if anyone is facing surgery fully diagnosed it is you :-)

Judy,

I forgot to give you my condolences on your job and benefit administrator giving you such hassles. That is the last thing one needs who has been ill and is doing the best they can to work when they are able. Good luck with this.

Sincerely,
Rosemary
Posted 11/30/2009 7:33 PM (GMT 0)
Jen, that's exactly what i've always been doing since surgery, when i get too plugged, i'd go on clear liquids for a whole day and usually by the end of the day it clears up. but i have to go around all day with the bloating feeling till it clears out only at the end of the day. also, it used to be more effective few weeks ago, now it's less, but still works great. some days are better than others, depending on what i eat. but it's hard to do this cause i get plugged very easily, it takes only one full meal to make me plugged, so i can't put my self on only liquids every other day.. it's too much. only by keeping the soft-liquid diet i can feel sort of o.k, and that way i don't need to go on clear liquids, but it's unreal to live on this diet! Marisa, i know how you feel, ever since i came back to work after the surgery, my bosses are giving me hard time too. they were very understanding throughout the 7 1/2 yrs i've been working for them, and i was very thankful, but now they just think that after i finally had surgery everything is 100% good. i tried to tell them that the surgery is not a miraclous solution, at least not at this stage post op. they keep asking me to stay more and more extra hrs and it's too hard for me right now. i think they are just trying to check my limits, but i'm not willing to stress myself too much at this stage, and they can decide whatever they want, it's up to them. i'm working my 8 hrs a day, can't give more than that right now. i hope things work out for you. maybe you should have a little talk with him and figure out what's bugging him and maybe there's a way to streighten things out. anyway, good luck with your dr's appt and the tests... those are much more important! your health comes first! Tracy, just wanted to say hi, and that i miss you and thinking of you. hope you feel better. Janie, thanks! oh my.. it's so good to hear you can eat all these foods and still feel good! you know, in the last couple days i've decided to start trying activia yogurt, i ate it twice a day yest and today and i think it's starting to help. i'll continue for few more days and see how it goes. will let y'all know. if the affect doesn't last, i'll start thinking of maybe going to an austheopath (sp), there's someone i've heard of, he's been a colorectal surgeon for yrs and then decided to learn about nutrition, and now he's consentrating only on nutrition. so with the combination of being both a colorectal surgeon and an austheopath, it's should be interesting meeting him. he's one of a kind and i've heard he's really good. maybe he can help me figure out what, when and how to eat to regulate my b/r habbits.. i really hope so. Lizzie, thanks so much for your concern! but i'm more worried about you.. all of this vomiting is concerning. oh honey... will we all ever be o.k again...?? it seems it never ends.. love you too! Jenise, i love your talking about faith and all you've said is SO true!! you give me strength! praying for you, honey, as your day is approching!
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