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TOTAL COLECTOMY PART 25

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Posted 9/24/2009 4:05 PM (GMT 0)

I would wait until you get the all clear from your surgeon.  You will have plenty of time to catch up on your cleaning.  It's been almost 4 months since my surgery and there are still a few things I don't do (only because my husband won't let me)

I am on Coumadin due to the clot they found in my heart after surgery.  Anyone else on it.  My hair is falling out and the bruising it terrible.  I had my INR checked today and I am at a good level.  This medication is rat posion and I can't wait to stop taking it.

I am so thankfull that I can vent my feeling here.  All my friends, family and co-workers have been wonderful, but they don't understand that this surgery was a life altering event for me.  Yes I feel better but from day to day I don't know how many times I will be going in a day.  I still worry about going out to dinner for fear that something I eat will bother me.  I have tried taking 1/4 of Imodium and that constipate's me.  I shouldn't compain but I have this fear of not being able to go.

Thanks for listening, conmarjo

Posted 9/24/2009 4:31 PM (GMT 0)

Hi all-

So tomorrow is my last day at work. I will be gone Sat/Sun at a concert with my girlfriends in Milwaukee so it will help keep my mind off of things. I did better yesterday except still puking if I eat a sybstantial amount of food. Talked with my surgeons nurse yesterday and b/c i am at such an extreme risk for obstruction now and after reversal it may be something I am eating and she said I cannot even have "one bite" of things that bother my stomach after this reversal.

Thanks Judy, again, for all your kind words. You really make me feel better about how I feel. I can see the light...I think my biggest fear is re-obstruction and ending up with a permanent ileostomy. It just so scary that I am such a high risk and I hate not having a medical explanation as to why my rectum is working right now, but at the same time I hope with all of the positive tests this in fact will remain working. You are just the sweetest and encouraging person. I do not knwo how you do it.....I am so happy you are back doing what you love, but I still worry about your silly issues that continue on. Love you so much and pray for you daily.

All in all, I truly am optimistic, just have some huge fears that fleet though my head everyday. I have my review at work today and this too is always nerve wrecking. With all of my ilness I hope it doesnt affect how I am viewed as a nurse. We will see....

I hope all of you are doing well....so many surgeries fast approaching. Jenise, Jen, Shmuel...I am praying for all of you and for peace of mind and quick recoveries. Let me know if I do anything for you all.

Hodaya- I was not able to lift over 20 lbs for six weeks, but I did light work at about 5 weeks too....it made me feel better, but do not over do it. You are still at risk for hernias. Be careful, but do what you can to make yourself feel better and just listen to your body. Stop when your tired and dont over-do-it!!! Love you honey and thanks for always talking to me.

Janie, Jenise, Jen....how are you all feeling? Jen have you been better able to keep some food down. I know that trying little bits of whatever is the only reason I am maintaining. I am down 4 from my MD appt when they scheduled my surgery, but still holding at a healthy weight for surgery....you I am still very worried that you are nto going to be string enough.

Jenise- I bet you are so excited for your trip....before my first (TC) I went to Mexico for 9 days with my hisband and his family. I had fun, I was miserable in terms of not pooping, but that is where I would have wanted to be before the big day....it was relaxing and helps ease the mind. I came back, worked one day and then prepped for 4 days and had surgery. Thinking and praying for you.

Janie- How is your wekk going....love ya girle and always praying for you.

Welcome Schmuel- Hope we can offer you whatever help you may need!!!! Ask any questions!! We are here for you. I am also an RN and know how hard it can be to work through the pain, nausea, and just feeling yucky. My surgeon is Israeli and I love him and trust him dealy. I had all my most recent testing in Cleveland ( I am a very rare case with very , but my insurance will not cover me to have surgery there....This will be my third surgery next week and like you, I hope it is my last. I hope the ileorectal TC works for you.....I have lived with an ileo for almost 6 mo and its liveable, but the ileorectal connection is much easier if it works for you!!! Wishing for the best and praying for you.

Lizzie

Posted 9/24/2009 7:23 PM (GMT 0)
thanks so much everyone for your responses. actually about the cleaning part i guess it's no bigie and i can manage to wait a little longer, esp if my mom is helping and basicaly doing everything for me now. my main prob is my dog. he's very old, just turned 17 on Spt 9. he's having hard time lately going down the strairs by him self and we have to pick him up to take him outside. usually my mom is the one who's doing it, but sometimes i get stuck with him needing to go outside and my mom is not around and if i dont take him on time, he'll pee right inside the house....... yuck! so what i'm asking is when can i pick him up myself? he weights about 20-22 lbs. so what do y'all say? i sure don't want to risk my health over this, after all it's 22 lbs we're talking here, right? will 8 weeks post op be enough? anyway, i can feel everybody's excitement about their up coming surgeries, Jenise, Lizzie, Jen, Shmuel, i feel your fears and concerns, i've been there myself not long ago, yes, it's overwhelming. please keep in mind that you're doing the right thing towards regaining your health back and it'll all be worth it! i'm so glad i had this surgery, i can't even describe it in words! it's the best thing i could ever do for myself - absolutely the best decision i made. stay strong everyone. love you all and you're always in my prayers.
Posted 9/25/2009 12:13 AM (GMT 0)
Hodaya, my doctor told me that at 6 wks. I could lift 10-15 lbs. However, I knew that I couldn't. I may be completely different than you, I am still very weak and have trouble lifting 8 lbs. and I am 10 weeks post-op. I feel like I have pulled something in my right side of the abdomen. Also, underneath the belly button it is very sore. I am having the same trouble you are, I can't go. I just all of a sudden quit two weeks ago. I go a day and a half with nothing coming out. I have a full feeling all the time now. I have tried Miralax twice and it hurt my stomach so bad, although I did go, but it was only a little at a time. I called my doctor today and probably will go back to Birmingham next Friday to see her.

Lizzie, I am worried about you as well as everyone else. I am praying for you. Please don't get too low before surgery.

Jen,I am sorry you are so sick. Your recovery will be much harder if you continue to lose weight and can't eat. I will be praying for you too, sweetie!

Schmuel, Glad to have you on the site! I have heard of interstitial cystitis. I can't believe all that you have already been through. You should think this is a breeze and that we are just whining!!!

Marisa, I am so relieved someone has felt what I feel. I don't know what it is either. I think alot of it is my PFD. Are you doing any better being able to go?

Judy, Jenise, Janie and everyone else - I love you all and am so glad to have you to talk to! This forum is a true blessing from God!
Posted 9/25/2009 4:03 AM (GMT 0)
Christy,

I'm so sorry you're having trouble going. I think 10 weeks was about my best time; before that I went all the time, and from about week s 9-11, I was going really well about 5 or 6 times a day. Around week 12 I started having trouble. Some days are good (like yesterday) and then today was good until dinner, now I'm feeling pretty crummy. I have horrible rectal pain. I went to biofeedback today, but this was my last day. It's not working. I made an appt. to see my surgeon next Thursday. It's been 6 months and while I can still go some, especially if I drink juice or use an enema, it's not good. I feel pretty miserable alot of the time. As long as I don't eat, I'm good, but then I eat and the food just goes through me and sits in my rectum.

I can't remember; do you have a rectocele? Did you have pelvic floor dysfunction? I haven't tried miralax or MOM yet, but I'm going to wait and see what the Dr. says. I want to ask him for some tests to see how bad the rectocele is. He said I might need the STARR procedure to repair it. I will definitely try it if he recommends it. I hope you get some answers next week. Did you go alot the first few weeks? I'm sure you've said, but I forgot.

Hodaya,

Glad you're doing well sweetie. Don't overdo it! I lifted my little granddaughter about 6 weeks after surgery and she weighed around 15 pounds. I know I shouldn't have, but I couldn't help it. Luckily I didn't get a hernia, but if you can wait just a few more weeks before lifting your dog, I would. You don't want to hurt anything now that you're doing well!

Lizzie,

I'm not surprised you're anxious and worried, but I'm glad you're getting away for a girl weekend; sometimes that's just what you need! Have a wonderful time and try not to think about more surgery...just have fun.

How was your anismus diagnosed? I want to ask my Dr. next week about it. I really have no idea what my problem is; I think the small bowel is working and the problem is my rectum, but how do you know if it's an anismus?

Hugs to everyone,
Janie
Posted 9/25/2009 4:13 AM (GMT 0)
I agree with everyone about lifting. My bladder removal was in Aug 07 and I was lifting heavy things in Nov. 2007 and I got a lot of ventral hernias that were repaired Oct 2008. So forget lifting if you can. Thank you all for being so supportive. I am really scared about the surgery Oct 14- especially the NG TUBE, I remember it from my bladder removal, it gagged me for 1.5 days. I have to take a gallon of Go-Lytely Oct. 13, I hope that doesn't gag me, I did that before the colonoscopy and it made me vomit. Lizzie, I am glad that you are an RN, it is very hard being a nurse, knowing too much, and right now on this day I am not even sure I have a job. I have a condo, a puppy, a wonderful heavenly father, and me, that is all. A couple friends, but no body except all of you who understand what lifelong constipation feels like, and some understand the nausea. I just want to get the TC with ileorectal anastomosisi done and overwth, then recover, and move to the suburb of a big city. Where I live the opportunities for nurses are limited, and I want to do so much more as a nurse. All of you, I look forward to reading your paragraphs every evening, it gives me more confidence that I am doing the right thing. Right now, I am so afraid I am going to find out if I keep or loose my job tommorrow, Friday, please pray for me that I get to keep it. I have been there and working real hard for 4 years. Can't give the details on this site. Thanks, Shmu
Posted 9/25/2009 11:43 AM (GMT 0)
Janie, the anismus is diagnosed with simply all the tests that demonstrate the pelvic floor ability to function, which mostly means the manometry and the defecography, and also a dr's manual exam when he simply asks you to push out his finger (horrible i know). anyway if you have anismus, which i REALLY HOPE YOU DON'T, it will be shown on these tests. honey, i really really hope it's the rectocele, or maybe even a prolapse that are causing you all the troubles and not an amismus, cause you see, the prolapse and rectocele are anatomic probs and can be fixed with surgery, but anismus is a functional prob that involves a failure of the muscles to function right and so far medicine havn't come up with any solusions for that, except for biofeedback and botox injections, which we all sadly know are not helping. keep us posted on your dr's visit, i can't wait to hear what he thinks. Christy, are you still eating beans? i would try to quit eating them, cause i think all of grain foods like beans, soya, corn, hummus grains and all the other types of beans are not good for us. i ate soya (tofu) for a week and it really stopped me up bad. i quit and things are back to where they were. these grains makes us swell so bad with little outcome and bad cramps. the week i was eating it was a week of h***ll, till i figured out that was the cause. i feel SO much better now that i quit with it. i basically eat mostly soft foods like mashed ptatoes, cooked and peeled carrots and zuccini, scrambled eggs, only 2 slices of toasted bread in the morning and not more, plain classic Kalog's cornflakes, cooked and peeled peaches (i'm gonna try to add pears next week and see how it works) i can also eat cookies, icecream... but that's it. it's kinda dull, i know, but it's worth the way i feel. Shmuel, i'm also jewish and i live in israel. don't be scared, you're doing the right thing. ask your surgeon if they can put the NG in while you're asleep, that way it'll surely be easier for you. everything will be fine, i truly believe you will do great! you have to be positive and keep the faith - ALWAYS. i'm praying for your health and well being and happiness! BTW... do you read hebrew...??? cause if so, then i wanted to tell you: שנה טובה וגמר חתימה טובה!!!!! LOL but if you can't read it, it means have a wonderful new year and may you be signed and sealed in the book of life (for everyone, it's the jewish holydays now and this is a greeting used on Yom Kippur). dear Lizzie.... praying for you real hard!!!! mean time, you go a head and have some FUN on the weekend!!!!! love you all!
Posted 9/25/2009 12:32 PM (GMT 0)
Good morning,

My surgeon called late yesterday and I missed the call! By the time I got the message, the office was closed, and today I know he is working in the hospital - so I might have to wait till next week to hear from him again! Darn.. I know he must have wanted to discuss that last test.. I hate waiting. (UPDATE: his nurse just called, Dr. is out of town till Monday - so I won't hear back from him till then)

Hodaya, I know it must be hard not to lift your dog, but I do think you must take the advise of everyone and wait! There really is a reason we are told not to lift - and why risk it. Glad to hear you can eat ice cream, I do love ice cream!

Janie, I do think a defecogram does reveal anismus. I have had so many pelvic floor issue - but thankfully - no one has ever mentioned anismus to me! The rectocele does definitely cause stool to be trapped, and gives you the feeling you can't empty. I knew my rectocele was back to some degree, because of this sensation.. and I have to "splint" (I push on my perineum area - some ladies push the budge in their vagina's) to empty.

Shmuel, sending a pray your way that your job is secure! That is not another thing you should have to worry about! That Go-Lytely is awful stuff, and I have done that 2 times in the last 6 months. I am so surprised, shocked - and happy - that they said NO bowel prep for me! I guess there have been recent studies that show that there are no real benefits, and can have some negatives (dehydration, and electrolyte balance) - however - there is of course controversy in this... so it really depends on the doctors I guess.

Lizzie, hope you are having a wonderful time, and keep your mind off Monday! I am so looking forward to the cruise, but my constipation does become 100x's worse when on vacation! I am of course packing my Miralax, and extra fleet supply! LOL This is going to be my last food party for a while!

Hello to everyone else!
Posted 9/26/2009 1:21 AM (GMT 0)

Hey everyone I haven't had time to post lately.  I have been busy with work, I have so many inspections to complete before I go out for surgery.  Trying to get the inspections done and work around feeling bad is a challenge. 

Lizzie I hope you are having a great time and try not to think about the surgery.  Just enjoy your time.  I hope you are not throwing up too much and can enjoy yourself.  I am praying for you.

Hodaya, like the others said don't rush things and lift too much.  I am glad that you are doing well it makes me feel better about my surgery.  I already eat a very bland diet so I think the residue diet will not be too difficult for me.  Though I do like salads but figure that will be a no no for awhile or forever.

Jenise our time is getting closer.  October is right around the corner and then the countdown is on.  I guess we will be in the hospital at the same time.  I am still not eating well but I do try to lift weights each night here at home to build up some muscle.  I did eat a little better today.  I had some chex mix around 8:00, then around 3:00 a grilled KFC drumstick with some creamed potatoes, then at 8:00 tonight I had a small salad and some cream potatoes.  That is a very good day for me, and I don't feel too bad.

Christy, Janie, Shmuel, Marisa and everyone else I am thinking and praying for you.

Jen

Posted 9/26/2009 4:50 AM (GMT 0)
Hi Girls,

I wrote a whole bunch of stuff to everyone late last night after Grey's Anatomy but then I hit something on my computer and I lost it, it was so late by then that I decided to go to bed and try again today.  I finally got my new computer and am getting used to it.

Anyway, Lizzie- I hope you're having a blast at the concert, you so deserve to have some FUN!!!!! Who are you seeing?  When you get home, then is the time to get ready for this surgery that you have been waiting for all these months.  You are probably the strongest person I know.  You have had just about every possible complication but you come out fighting and always ready to take on the next obstacle.  This IS the LAST one that you will have to face; go into this with faith and determination and fight the fight.  I believe in YOU and know you can do this!!!!!  Always know that I'm here for you, love you and have you close to my heart! ((((HUGS)))

Hodaya-Girlfriend, What are THINKING!!!!!!!  Haven't I preached to you enough about what to do and not to do after surgery-LOL - No really, please don't try to lift things, especially your precious baby (dog).  I know it's hard but you have to let your body heal and you know it takes months.  You've waited so long for this surgery and you don't want to do anything to jeopardize it.  Oh, by the way,you diet is pretty much about what I ate at 5-6 wks. gradually you will be able to add a variety.  A low residue diet is not bad at all and eventually you can add spices, sauces, pasta, etc.  I am now adding hot sauce to everything like I did prior to my surgery, yes it does cause loose stools but not excessive D and I love spicey foods so it's so worth it   smilewinkgrin    

Shmuel-I'm so glad that you have joined us!  I can kind of relate to you as I have had several kidney surgeries since May (6) and have more to follow.  I started with a nephrostomy tube for 8 wks followed by an extra large stent for 6 wks and now have a smaller stent up into my kidney  which will be replaced every 3 mos until next summer.  I have also had numerous abd. surgeries and when I had my colon surgery it wasn't bad at all, when you've had several you get used to them.  Mine was open & I was in the hospital for 5 days.  Definitely ask for the NG before you wake up & ask for an epidural if possible. I was extremely nauseaus (sp) before my surgery; I used to take zofran 3xs a day for 5 yrs and after surgery I stopped taking it about 2-3 mos later.  I now only take it for a few days after I have another surgery so I hope and pray that this surgery helps you with the nausea too.  Everyone on here will be here for you and love and support you every step of the way and beyond.  We have all been through so much and we have helped each other through all of our fears and joys and you are now part of our family.  I just want you to know that you will be in my prayers and you can always ask us anything :)

Jen & Jenise- I know it's easy for me to say to try to relax and enjoy your time before your surgery, but do TRY to enjoy some of that time.  I know I was a little anxious beforehand but was mostly very excited that there was hope and that I could actually live a better life.  I don't know if you've read back far enough but my husband (Tim) started crying as soon as we started pulling out of the driveway and I spent most of the 3 hour trip to the hospital trying to ease his fears, so I really didn't have time to be scared plus our daughters met us there and I would NEVER let my daughters see me scared of surgery.  They have been through too much in their life (but that's another story).  Anywho... be strong, be determined and have faith that all will go as planned and you will be on the other side with the rest of us soon.  Love you both and many ((((((((HUGS)))))))) to you

Christy- I hope you are feeling better.  Please try to stick with the low residue diet.  Before my surgery I was on a wheat restricted diet, not a gluten free but I watched my wheat intake due to it making my constipation worse.  My surgeon thought the surgery might help with my intolerance but it really hasn't so you might want to try watching your wheat intake.  You don't have to give it up completely, just limit it.   If I eat toast for breakfast then I don't eat a sandwich for luch or else I buy wheat free bread.  I also buy wheat free pasta.  I know that when I did eat a lot of these products I had constipation again and had to use miralax.  I hope you get some answers.  Always in my prayers.  (((Hugs)))

Janie-I was so hoping that things would get better.  I am praying that your dr will have some answers for you.  Don't give up; remember all that Lizzie has gone through and now she is having her reversal :)  We are all here for you.  Love you.  (((((((HUGS))))

Marisa, Tracy, Conmarjo-Hope you are doing well; hugs and prayers to you.

An update on me, I got ahold of my dr after we played phone tag today (his words -  LOL) he explained everything that's going on which is basically that the ureter he fixed is working perfectly-YAY and that a small tube in the upper part of the kidney is not working properly causing the kidney to be inflammed and not drain correctly.  He is going to consult with some "famous" (his words) guys in Calinfornia some more seasoned, experiened drs to see what to do as he doesn't know how to fix it and he will call me late next week.  I asked about the 6 mo. ct scan & appt his office schedule for me; he wanted to know who scheduled it and was going to check the computer and was glad I questioned it because he said a stent could never stay in that long and someone should have never made my appt for then.  I am very thankful that I was led to this dr, one because the last dr I had wouldn't have known what to do and would have taken my kidney out be now and two, this dr is smart enough to admit he doesn't know everything and is willing to seek outside opinions to find answers.  I finally know I'm in the right hands yeah !!!!!!!

I hope everyone has a wonderful weekend; try to enjoy yourself and do something FUN!!!!!!!!!!!!

Love to you ALL,

Judy

 

Posted 9/26/2009 6:43 AM (GMT 0)
Hi loves...

I leave in the am for the concert....we are seeing Kings of Leon. All of you in yhe US probably know their song "use somebody"....I just love their sound, they have a lot of great songs. I am excited..but have not had a very good day. Its 230 am and I am still wide awake. I threw up twice today, at work and home after eating. I am a little concerned. Its so strange....I eat a normal sized meal (for us) and then I get extremely boated, feel nauseated, bag fills completely, snd then I vomit 20 min later....I am SO scared. My biofeedback therapist left me a wonderful message of positivity. I was unable to make my last therapy appt and she was hopeful and wonderful in her message, She wants me to re-start therapy after I am healed. I got my surgery time tonight at 630pm....I have to be to the hospital am and my surgery is scheduled for 1 pm. I had to give my history and their last question was "what is your biggest fear for surgery?" I replied....."it not working" and she replies" I understand your fear, I do not blame you"....but again, I told her my famous words...I am "cautiously optimistic!"

Thank you all for your prayers. I start clear liquids Sunday evening and Monday. I have yeast all over my site today, but hopefuly it will clear up. I got a great review at work, despite my illness. The physicians have to rate you 1-5 and its my first year working for them ( and I have obviously been ill) and it was 30 % of my eval. I was rated my three physicians and I got a 5, 5, and 4.5....pretty good considering all the circumstances. My only areas for groeth really were regarding my strngth, ilness, etc, which I was a little disappoited about b/c it does not define me as a nurse, but I gues affects my abilities. I am off for 8-12 weeks depending.

Sorry to ramble..... I just wanted you all to k now how much you all mean to me. I showed my sister for the first time the websit and all of your messages. I started tearing....you all mean so much to me, and I could not get through a day without you all. You mean the world to me and I hope and know as I face this third surgery I will have you all right next to me even though your miles away. I love you all so much and wish you all the best. You all are going through so much and yet you can think of me.....that feeling is unreal. I will be gone for a couple, but back Mon until surgery day on Tues. Love you and praying for you all.

Lizzie

Posted 9/26/2009 7:45 AM (GMT 0)

evans18 said...
Christy, I had my surgery due to chronic constipation. Once my doctor got in there and removed the colon he saw that it was in very bad shape. I have had blood in my stool ever since so he is thinking that I have Crohns disease. He said that would make sense since the colon was so terrible. It just doesnt get that way from chronic constipation. So my test is tuesday to confirm this diagnosis. I just hope it is an easier test that what I have already been through. I feel exhausted from medical tests!!!

So is Hodaya in the hospital still? I threw up bile for days. Never had a ng tube. It just gradually got better. And I started eating very very slowly. I hope she can get past all this yucky stuff and start healing. Hope to hear from you soon sweetie!!

Marisa

hI, I am a chinese woman and have severe constipation, can you tell me your life after remove the colon, are you have severe diaherra. I am very scared of the severe diaherra. How many time diraherra for you now ?

Waiting for your early reply.
Posted 9/26/2009 5:09 PM (GMT 0)
Hey Smarty, I have had diarrhea since my surgery in May 09. I have complete control, it's just that when I do go it is very very loose. Yesterday was a bad day. I went 12-15 times. My bottom was very sore. But I am so thrilled to be going that it really doesn't bother me except for the sore bottom. I took an 1/8 of Immodium today to see if that will slow me down. I feel great, very thirsty, but busy making soup,cookies and a cake. Life is good and am thankful for every day I am able to poop!
I was off of work for 9 weeks. The last 3 weeks were spent walking at Target or any other store I could hang on to a cart for support. Enjoying meals out with out cramping. Just enjoying life again.
Are you having surgery and if so when.
Posted 9/26/2009 8:04 PM (GMT 0)

conmarjo said...
Hey Smarty, I have had diarrhea since my surgery in May 09. I have complete control, it's just that when I do go it is very very loose. Yesterday was a bad day. I went 12-15 times. My bottom was very sore. But I am so thrilled to be going that it really doesn't bother me except for the sore bottom. I took an 1/8 of Immodium today to see if that will slow me down. I feel great, very thirsty, but busy making soup,cookies and a cake. Life is good and am thankful for every day I am able to poop!
I was off of work for 9 weeks. The last 3 weeks were spent walking at Target or any other store I could hang on to a cart for support. Enjoying meals out with out cramping. Just enjoying life again.
Are you having surgery and if so when.

Hi dear Conmarjo

Very grad to receive your information, now, no poop coming out at all, and the laxative not working, my relative is strongly resist me to do surgery, I am not sure I can do it because so many poop inside intestine, I am very scared and don't know what to do, I am a chinese woman with my son living in calgary, the doctor here also not suggest me to do surgery as this is major surgery and sevre diaherra, please give me some advice. now i feel very suffer every min and can't concentrate at work, and couldn''t sleep every night.

your early reply is highly appreciated.

In Hong Kong, We saw on television 2 persons have 28 diraherra/day, they both want suicide. If I am so unluckly I don't know what to do. But I really in pain. Don't know people usually poop how many times, is it these 2 persons is common or uncommon.

Do write me something, give me some encourgement, because I am very depressed about severe servere severe constipation 5 months only a few time, are you also suffer constipation before

Are you in great pain after remove the entire colon, you through lap. surgery or open surgery ?

I alreay feel sick and cannot concentrate to take care of my son. I feel very guilty.
/

Post Edited (smarty) : 9/26/2009 2:23:24 PM (GMT-6)

Posted 9/26/2009 8:15 PM (GMT 0)
I dealt with constipation for such a long time. Over and over I was told to increase my fiber intake, take milax drink more fluids. After doing this for years I finally had a doctor listen to me and I went to see a GI specialist. After doing the sitz marker test, it was clear my colon was no longer functioning. I was told that increasing my fiber was the worst thing for me to do. My only option was to have my colon removed.
You need to do what is best for you, not what other think, they are not dealing with all the discomfort. It's easy for others to give thier opinion when they aren't in pain. It is major surgery, but it gives you your life back.
Posted 9/26/2009 9:57 PM (GMT 0)
hi smarty and welcome, please don't be scared, going for so long w/o a bm is so not good for you, having this surgery will make you feel so much better. i struggled with sever sever constipation for 16 yrs!!!! and it was NOT getting any better, only worse. over the yrs i had drs telling me there's nothin wrong with me and it's all in my head.... yet there were other drs telling me my condition was too complicated, that i should have my colon removed but they don't want to deal with it cause they were scared to make it worst. well i finally found a surgeon that was willing to do the surgery. i had the surgery 6 weeks ago. i feel SO much better now. i go 5-8 times a day, small amounts each time, but it's just great to be able to go! if you want to really learn about this surgery outcome, you can google "total colectomy part 3" then part 4 etc till this part and you'll learn A LOT about it. i hope you find a dr that will be willing to help you. Judy.... love you honey, thank you so much, you are very helpful! it's truly a blessing having you here. i'm SO happy for you that you've been able to find this kidney dr who's so good and helpful to you, it's SO important to have a good dr! a patient can heal better if he has a caring dr. i hope and pray he finds the most right answers for you!! i really do. love you! Lizzie, thinking and praying for you!! how is everyone else is doing? i'm kinda feeling down a bit, maybe it's just some post op blues.... i think im getting so sick of being at home. i wanted to go back to work on Oct 1st, but just spoke to my boss and he said he'd rather have me back when the holydays are over, which is Oct 11. i wanted to be back already, but oh well, ten more days, no big deal...
Posted 9/26/2009 10:12 PM (GMT 0)

2b ColonFree said...
hi smarty and welcome,

please don't be scared, going for so long w/o a bm is so not good for you, having this surgery will make you feel so much better.

i struggled with sever sever constipation for 16 yrs!!!! and it was NOT getting any better, only worse. over the yrs i had drs telling me there's nothin wrong with me and it's all in my head.... yet there were other drs telling me my condition was too complicated, that i should have my colon removed but they don't want to deal with it cause they were scared to make it worst.

well i finally found a surgeon that was willing to do the surgery. i had the surgery 6 weeks ago. i feel SO much better now. i go 5-8 times a day, small amounts each time, but it's just great to be able to go!

if you want to really learn about this surgery outcome, you can google "total colectomy part 3" then part 4 etc till this part and you'll learn A LOT about it.

i hope you find a dr that will be willing to help you.

Judy.... love you honey, thank you so much, you are very helpful! it's truly a blessing having you here.

i'm SO happy for you that you've been able to find this kidney dr who's so good and helpful to you, it's SO important to have a good dr! a patient can heal better if he has a caring dr.

i hope and pray he finds the most right answers for you!! i really do. love you!

Lizzie, thinking and praying for you!!

how is everyone else is doing?

i'm kinda feeling down a bit, maybe it's just some post op blues.... i think im getting so sick of being at home. i wanted to go back to work on Oct 1st, but just spoke to my boss and he said he'd rather have me back when the holydays are over, which is Oct 11. i wanted to be back already, but oh well, ten more days, no big deal...

Posted 9/26/2009 10:53 PM (GMT 0)
Hi 2b colonfree

Thanks for your information. Now, nothing coming out, I don't use laxative because it is useless for me. My brother is strongly resist me to do surgery, it is so danagerous and severe diaherra. I plan to go back to Hong Kong to find doctor. Actually, I am very scared will have 28 times/day diaherra.
I just seach google total colectomy I cant find part 3 and 4.

I am very depressed and feel no hope for the future. and seem cannot take care of my son.
Posted 9/26/2009 10:54 PM (GMT 0)
Hello everyone!

Smarty, I also have severe constipation. What laxative do you take? Because I take miralax everyday and this helps me enough to keep me from having a blockage, but, I have to take 3 times more than the recommended dose. You have only had a bm a few times in 5 months???? How long have you suffered with constipation? Have you had any tests ran like a ct scan, mri, defecogram, anal manometry, and a colonoscopy???? Because if there has been a major change in your bowel habits, this can signal something is wrong with you. I have suffered constipation my entire life, so, this is just normal for me. I feel for you and know exactly how you feel. FULL OF CRAP! LOL

Hodaya, so glad you are doing well...you said you can't eat humus?? Is that beans?? I never ate humus before and not sure what it is. I know I bought some fiber one yogurt and ate 1 serving and OMG, I thought I was going to die....my stomach swelled with gas and it felt like my intestines were burning. I did not sleep well that night eiher. It was horrible and I will NEVER try that again.

I can't seem to get an appt with my colorectal doctor because he is never available when I am and I am never available when he is...very frustrating. I may change doctors once again because he is just not flexible enough. I was supposed to have a follow up appt with him 2 weeks after my botox, but he didn't have any appts until 6 weeks after and I was already back to work. I am off work Oct. 9-12th, but so is he. UGH!!!! Besides, it took him a month to call me back to even schedule the botox and that is what caused me to not get anything done before school started back in the 1st place. Anyone know of a good colorectal doctor in Atlanta, GA? LOL I may just call his practice and ask to see another doctor in his practice...would that be wrong of me?

I have started a new clean put process. I am taking 1 dose of miralax everyday during the week, just to keep the miralax in my system and taking 15 doses divided sat and sun to get a good clean out before work on Monday. This has worked ok so far, but it screws my weekend up really bad. I mean, I can still go shopping, but I have to stay here for hours and hours just to get the poop out of my body since I can't push the poop out like a normal person. I feel like a bad mom because I stay in the bathroom and miss so much of my childrens lives. This makes me very sad and depressed.

Everyone else, hello and I hope all is going well. I am way behind on the posts and Lizzie and Jenise, good luck with your upcoming surgeries.

Tracy
Posted 9/27/2009 4:53 AM (GMT 0)

Judy- thankyou so much for writing directly to me. It is so comforting to know that there is someone else who experienced nausea with severe constipation. Constipation for 40 yrs, nausea for 2 years since I had my Indiana Pouch placed.  I wish I could talk directly to you, if there is a way, please let me know, I promise I am not a stalker. I had to have stent in my left ureter after my bladder removal because it clogged up. Then they lasered it open. The best doctor for that is Dr. Shulam at UCLA Med center in LA. He fixed me and my ureter is wide open now. Good kidney function. Terrible colonic function. NO bms without dulcolax. Go-lytely one gallon on oct 13, Total abdominal colectomy with ileo-rectal anastomosis on Oct 14. They will insert the NG tube while I am on the operating table, then a fentanyl pca pump. I pray that the nausea goes away after the surgery. I have Zofran ODT, but I don't take it because it doesn't work, I just belch and be nauseous. I still work, although right now I am not sure I still have a job, I am an RN and so thankful there is  a nursing shortage. I plan on leaving Virginia and going to a state where there are tons of nursing jobs, so I can easily pick one. Today I took my puppy to my favorite place, had eggs at the waffle house, then went to the YMCA and swam 20 lengths- no nausea till about 5:30pm after the Haagen Daz chocolate ice cream cone, and then later a baked potato at wendy's. Emptied my urine pouch 3 times, but can't shake the nausea and I won't let myself vomit. No bms today, so I am clogged up, can feel it. When I was busy working- I am a home health nurse- 2 days per week, I could sort of forget the nausea, because I was so busy taking care of my patients and charting, now since I am off till a decision is made, I don't know what to do with myself and my puppy and I feel the nausea more. Going to church tommorrow and taking the puppy for his last set of shots- he is my best little partner. I will miss him while I am hospitalized.  I really thank all of you for your posts, I look forward to reading them at the end of the day. I am getting to know you.

 2bcolon free- back in 1985 when I went to Israel to visit a brother and see the country - Hadassah hospital offered me my first nursing job. I didn't take, but came back to the states and have been nurse here for 24 yrs, hard job, but rewarding. Happy holidays to you too, I can read hebrew, but can only translate a few words. My brother lives in a Moshav near Kryat Shmona, my other brother married an Israeli woman. and I gave my puppy the most beautiful hebrew name- Shmuel and I call him Shmuly. He thinks I gave birth to him.  That's ok, Every one have a good Sunday

Posted 9/27/2009 2:16 PM (GMT 0)
smarty, this surgery can really help you. the diaherra is only at the first few weeks, but soon enough it settles down, the small intestines learns the colon's job and the diaherra slows down significantly. i don't know which stories you've heard.... did those ppl who ended up with 30 times diaherra a day have the surgery for colonic inertia? cause if not, then the results are totally different for ppl who do it for crohns, colitis or colon cancer. with colonic inertia more than 90% of cases never end up with such outcome, just the opposite actually, not only that we don't get the sever diaherra but with colonic inertia the probability is that after a certain period of time, the constipation may unfortunately be back..... which did happen to some women who had the surgery. i'm worried about having constipation again rather than having diaherra. if you read back, you'll find out non of us had sever diaherra, and if so, it was only for a short period of time after surgery and then it slowed down, i already have only 5-8 bms a day and the stools it really formed. so really, you have NOTHING to worry about in this matter. with all due respect to your brother, but he doesn't know anything about colonic inertia, and you are the one who owe it to youself and check all of this thoroughly in order to be able to know and decide what's right for you. i truly wish you all the best with finding a dr and making the decision. Tracy.... thanks. today i'm confused again. i thought the tofu was giving me the bad blockage and gass, but after i haven't eaten it for at least a week, i'm having a blockage again. so i don't know anymore if it's the tofu. i did notice it happened on saturday, when we eat a lot of bread, so....... maybe it was just the bread and not the tofu....... ugh!!!!!! i'm gonna try not eating bread and eat tofu again for a few days again and see how it works, figuring out your diet post op is a challenge!!! and yes hummus is a kind of bean, i'm not sure about it, i havn't tried eating it yet. before surgery it used to give THE worse bloating and gass, more than ANYTHING ELSE i ate, so i'm still very very scared of trying that one. don't be so hard on yourself, Tracy. it's not your fault you have this problem, and dealing with this condition is truly life consuming. there are lots of sick ppl in the world and they all miss a lot of life b/c of their illnesses. it's hard, but we must realize that we have a brob. but hopefully this prob can be solved, and with G-D's will for YOU TOO!! Shmuel, hadassa is one the best hospitals in israel. how nice to meet another israeli on here and i love the way you named your puppy!
Posted 9/27/2009 11:35 PM (GMT 0)
Hi everyone,

Lizzie, you should now be on clear liquids.. and surgery tomorrow! My thoughts and prayers are with you, and hope that in the end - everything will be som much more improved!

smarty, I think you have received some good feedback! I don't think most people end up with that much diarrhea a day! I think it could be possible to have 4, 5 or even 6 - but gee - it has to be better then not going at all!

Speaking of diarrhea.. I decided to try milk of magnesia.. which I never have tried because I have an aversion to swallowing liquids such as that! I even have a hard time with Miralax - which is tasteless! Anyway - that stuff worked within a few hours! I think I'll have to pack this with me on the cruise.. it will be a relief it it works then, as when I am away - thinks always get worse!

Tracy, it's good to hear from you and I personally think I would find a different doctor! I mean it is great that he is busy and all.. but I think they sometimes can be TOO busy.. and we get rushed and sometimes things get overlooked. That is just my personal opinion... but if they are that busy that you can't get in for a post procedure check... well, I would be frustrated!

Hodaya, you sound like you're doing well! I hope that things always keep moving for you (and all of us!) I got my hospital records and the records from my last defecogram.. and it also mentions that I have a "considerable amount of pelvic floor descent", no doubt from the childbirth injury 20 years ago.. but I was surprised since I just had the sacralcolpopexy - which basically lifts the floor back up. Anyway - long story short - this does cause bowel problems, and obviously - it is just something I have and have to live with.. so I am hoping my issues improve, but I am going into surgery knowing that I am looking for improvement - not perfection. I don't hink any of us will ever be 100% "normal" as far as bowel issues.

Also Hodaya, I hope you're not still feeling blue, but if you are..(((HUGS))) I think it is very common to have post op blues too! Hang in there sweetie - things will be so much better once you are back to doing normal everyday things - just try and relax and enjoy your time off!
Posted 9/28/2009 2:16 AM (GMT 0)
Lizzie,
I am continually thinking and praying for you!! I know tomorrow is such a big day for you, in more ways than one. I am praying for a speedy recovery for you sweetie. You have been such an ecouragement through all of my troubles and I can not thank you enough! We all love you much and will be with you in our hearts until you are able to get back on here and let us know how you are.
Smarty,
Welcome to this wonderful circle of friends!! I was like you for several years, I would only have one bowel movement every three to five weeks and that was while I was taking all kinds of laxatives. Do you have colonic inertia and do you know if you have Pelvic Floor Dysfunction. I just had my entire colon removed July 8th and I did go quite a bit at first (8-20) times a day. But all of that ended very quickly. Your body does learn to adjust. However, I am now having trouble even going once a day. I have the Pelvic Floor Dysfunction, and that is the problem I think. I am going back to see the surgeon this coming Friday. I know you are sick, but don't be too hard on yourself. Remember, you can't help it. It is not your fault and your son will survive it, you are still a good mother, and he knows that. I will be praying for you!
Hodaya,
How are you doing as far as going now? The last I read, you were just going like a spoonful a couple of times a day. That is exactly how I am, but sometimes it is only once a day and soo little is coming out. What is happening to us? I am so concerned. I hope I can find out something this Friday. Be careful and don't like that big dog of yours?
Shmuel,
Where in VA do you live? I just love that state! I am down in Mississippi. So your surgery is on the 14th? Not too long to wait. I know you are very anxious to get rid of the nausea. I had an NG tube for a week in the hospital and I hated it, but it did help with the nausea. Where do you plan on moving to when you look for a new nursing job?

Conmarjo,
What do you eat in order to still have loose bowels? Nothing is working for me! I wish I could go easily and often like you!
Judy,
I have a complicated problem with my eating! about 2 1/2 years ago, my stomach quit processing starches (carbs). If I ate a piece of cake, oatmeal, rice, grits, bread, pasta or anything like that, my stomach would swell horribly and kill me for days. They said that the colon was so bad that the food would be backed up completely to the stomach ( I wasn't going but every five weeks for 9 mths.). The stomach was damaged and they are not sure if it will ever process those foods again. So, you see, I never went on a low residue diet after the surgery, I couldn't ! It was horrible, they didn't know what to do for me, every time they would try to have me eat a few bites of mashed potatoes or grits, it meant an extra day in the hospital because I would be so sick I was desperate. They said that I would be a guinea pig, because they had never had someone with this exact problem. I'm not supposed to eat raw fruits or veggies, which knocks out salads for me. I can eat eggs and chicken and fish (baked). Milk products are not agreeing with me and I am going to try lactose free this week. Pretty much, I am down to nothing left to eat! I don't know what to do. It takes much longer for your body to process protein and I am having very little BMs now, it is becoming a terrible situation. Do you know of anything else I can try? I thought about trying baby food this week, I never thought I would resort to that, but I don't know what else to do.
Jen and Jenise,
I know your surgery dates are closing in and both of you seem to be having trouble eating. Try to stay well and as healthy as you can beforehand. Please remind me of your exact dates, I can't remember.
Marisa, Tracey, janie and anyone i forgot to name! Hope your week goes well!

As for me, I was diagnosed with a small rectocele and I wanted to know if any of you have ever had one surgically repaired. What were your symptoms beforebhand and what kind of surgery (what did they do) to fix it? How long was the recovery and was it as bad as the TC? I am drinking Prune juice tonight. Maybe that will work.

Christy
Posted 9/28/2009 2:26 AM (GMT 0)
Lizzie-I hope you had a GREAT time at the concert!!!!! I'm a music fanatic and I love Kings of Leon! and just about any kind of music.  The day before my computer crashed I had just downloaded 687 songs; I was so mad that I lost all of them, now I've started downloading them again :)  I know you've started your prep, yuck, but that means that the end is FINALLY here, YAY.  Know that I will be with you in thought ALL DAY tomorrow. I pray that the dr is able to preform the reversal as planned and you are able to heal with as little pain as possible.  I pray that you find strength within yourself to continue on this journey until you are healed and that the Angels surround you and give you peace.  I love you and and sending you hugs.

Shmuel-My dr did the same thing to my ureter! I would love to talk with you; you can email me, just click on my screen name in the upper left corner of the box (finallyfree) and it will go to my profile. In the profile it will list my personal email.  I might not get back to you before Tuesday because I'm staying late tomorrow night at school to go to a board meeting and I won't be home until late.  I can't wait to hear from you:)

Hodaya-I think I just posted about wheat products (that would include most breads) and how I have to limit them because they cause constipation.  I try to stick with a gluten free diet but not completely gluten free because that is extremely strict; I just limit my wheat intake a lot.  It REALLy does help with the constipation at least for me.  Try it and see if it helps; let me know.

Jenise-Take whatever works at this point! and ENJOY your vacation:):)  Will be thinking of you and saying a prayer for you to have a safe and fun trip!

Tracy-Get another Dr!!!!!!!  One thing I've learned from all of this is that there is a doctor out there who is willing to make you a priority and will help you.  I used to feel guilty about changing drs but now I don't think twice about it.  I know that I'm important and I need to be healthy for myself, my family and my students and if my dr can't help me then I will find one who will.  Now all of my drs call me personally and I have each of their cell numbers. None of my previous drs did this.  So please find someone who puts you first because YOU are IMPORTANT!!!!!!

I hope and pray everyone else is doing good; sending hugs your way,

Judy

Posted 9/28/2009 11:27 AM (GMT 0)
Christy, as far as the rectocele.. I have had one for years, and I guess the last surgery to repair it failed, cause it is still there. There is a feeling of stool in your rectum, like you still have to go - because the stool gets trapped in this pocket. Most women will "splint" to empty.. meaning they take a finger and put it in their vagina and push the protruding budge, or they push (like I do) on the perineum area.. that upward presser empties that pocket. I should know today if the doctor will attempt to repair it - as it is not a small one.. but I have that mesh situation he is concerned about. Has the doctor ever said what is suppose to be a "normal" amount of stool? It seems that many here only go a little bit after surgery.. so I just wonder why! Are you actually constipated, or is that all there is? My surgery date is in just about 3 weeks away! I go Oct 21st, and Jen is Oct 26th! Both our dates are fast approaching!

Judy, wow.. how surprising to find that Shmuel had one of the same procedures!! this board is a God send!
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