TOTAL COLECTOMY PART 29

Hi Janie, thanks for sharing..

This morning - I actually feel like going home. I woke up hungry - for the first time and couldn't wait for breakfast. I ate the cream cereal, and pudding, and it tasted good! I also drank a hot cup of coffee and took a big walk. Got a little cramping, but not much... now I just need for the bowels to kick in and once I poo, I can go home.

I made sure to let people know about that uro resident. He was with the group today, and he just wants to appear important, and in charge.. he irritates me!

One doctor mention MOM... I hope I can go without that! I did pass more gas this AM.. but no sign, pressure of any BM.

I only have a few minutes but I wanted to check on a few of you who have been on my mind lately.

Hodaya - Alcohol sugars, like any laxative, are depleting.  They pull electrolytes and salt into your gut while also pulling in water to help stimulate a bowel movement.  The problem with laxatives is after taking them for a long period of time, your sodium, magnesium, potassium and iron will become severely low.  To answer your question, with a bag, I had to drink so much Sorbitol, alcohol sugar, that I was constantly depleted.  My kidneys went into failure, my heart starting beating very high, I was having difficulty breathing and such.  I ended up on life-support for 9 days.  Laxatives are dangerous.  Even now I get my electrolytes tested every month. With a bag I was getting my blood tested every couple of weeks.  This was a huge factor in getting the reversal.  If I was going to depend on laxatives the rest of my life, I might as well do it without the bag.  The whole point in having the bag was to be able to poop without outside agents.  A huge sign of low electrolytes is muscle cramping in your legs and feet - Charlie horse.

 

Jenise - it was lovely to meet you.  You look absolutely terrific.  I am nervous about you eating.  Are you feeling nauseated? Any progress today on your bm status?  Walk, walk, walk...I know you are, but that helps a lot.  If you can, drink lots of fluid. 

 

Jen - update please? I have not heard from you in a couple days.  Please let us know how you are doing and if you were able to go home today as expected.

 

Lizzy - Goodness gracious girl! Can you go to the ER?  My heart fills with so much anguish and sorrow when I read your posts.  I wish I could give you a huge hug or something.  I am so nervous for you.  You have to be completely depleted with your low diet and your laxative use.  Have you had your blood taken?  Have you tried probiotics your gut? You may need to restore the natural enzymes into your gut to help them work.  Also, have you heard of Motilium?  This medication was recommended to me by my GI specialist.  You can only get this medication from Canada.  In Canada, it is an over-the-counter medicine so you do not need a script.  It was band in the U.S. because it was increasing the milk supply of breastfeeding mothers. Many dr’s started to prescribe the medication for young moms and the FDA said that is was not one of the known uses for the medication.  Eventually the FDA forced the manufacture to take the medication off the market. http://www.canadapharmacyonline.com/DrugInfo.aspx?name=Domperidone2416&refid=yh&OVRAW=motilium&OVKEY=motilium&OVMTC=standard&OVADid=17329360512&OVKWid=173651237012

 

Sorry, I have to run..I wish I had more time to comment to everyone else…

Take care,

 

Hi - just updating and venting a little!

First, I actually feel pretty good, much better then I expected. My last surgery really knocked me out - for weeks.. but besides being tender and sore, I feel pretty good. If I put make-up on.. I'd look too good! LOL

I ate lunch - soup and sherbet. Again, it tasted good, I was hungry. My belly bloated and I did get mild cramps, but not horrible.

Okay.. for my venting.. that stupid uro resident made out my discharge papers yesterday, so now the nurse today is expecting I should poo! Going back a few days ago.. she went on and on telling me how some people like being in the hospital and they do things to stay.. so now I think SHE thinks.. I'm poo'ing and not telling! Everytime she enters my room she asks.. have you had a BM yet. I feel like I have to DEFEND myself, and I told her, I don't think it is that unusually not to have a BM after surgery.. and today is my first day of eating. I went on to say that the doctors said this morning that my bowels are still sleepy, and just need to wake up a bit more. No, no.. she didn't agree with that and said she herd good sounds. (she listened like 2 days ago). Again, I had to defend myself and tell her that's what the DOCTOR's said and the last nurse also said it.. so she had to get out her stethoscope to listen... now I was praying they were quite still, because I just ate and had cramps - THEY WERE! Now maybe she'll be quiet.

I really want to see MY surgeon.. I haven't seen him since Thursday. She said he makes rounds usually in the late afternoon. Another doctor came in, and I did vent, he told me not to feel this way - it's a big surgery and can days for the bowels to wake up again.

So, I told him I wanted to try the next step up in my diet, so tonight I'm going to eat a soft diet. If things are going to stop, or I cramp bad.. I rather do it here now then 80 miles away at home.

Thanks for letting me vent.. love you all

Hi all...

Just got a call from CC and now I am extremely nervous for this test and the fact I go back to work on Monday. The nurse called and I have to be NPO from Midnight till the test which could be 230pm in the afternoon. They will have me eat a little bar with the pill. She said its very large and ugly. I cannot take laxatives for 48 hrs prior to the test and the test could last 5 days!!!! and durin this time no plum juice, prune juice, stimulant (alcohol, nicotine), laxatives, etc. Reminds me of the sitz marker and I was so sick during that test. I told her about my vomiting and she said no one has yet to vomit up the camera. She explained that when I have "events" I have to push some button and then a marker is placed in the test?? I have no idea, but if I eat anything, I will be in the ER with an NG and in so much pain without the ability to take laxatives. I feel this is a dangerous time for me to be doing a test as this, but I have no choice either??? I had a small slurpee today and thats all...i still have horrible pain and feel like going to the ER, but have not. She told me I am a very complicated case!....i know :(

Hodaya- I feel your pain sweetie.I know you feel helpless and I wish I could be finding answers that would help you. You are constantly on my mind.

Amey- Thanks for the info on the medication. I will have to look into it...its ringing a bell, but I will have to do some more research. I wish you were here for a hug too...I wish all of you were. I have not told anyone what is going on, esp in the last two weeks besides my family. People are so sick of hearing what I have to say. I am so hungry, but I cant eat.....its no life to live all of these issues. I have been very sad today. I cannot believe I had incontinence last night????? I feel like my body is failing me. I have had electrolyte imbalances with each of these recoveries and in time my potassium and magnesium always start dropping. They were ok last week in the ER, but not sure now. My potassium is easily depleted and heart wise it is something that always worried be and with laxatives eventually catches up with me! You are so well informed and I truly appreciate all your support.

Jen- How are you sweetie???

Jenise- Stick to your guns girl and go slow...YOU know your body best!!!!! YOU know when your good to go home or try other foods...just be careful, dont rush, you have everything ready at home, presents wrapped, windows clean....let that body heal. walk, walk, walk as you have been and drink as much as you can. Mine did not wake up for 9 days...your not making this up!!! Some people!!! where they get the nerve!!!

Thinking of you all....Rosemary, Janie, Jusy, Tracy, Christy, etc!!

Lizzie

Going back to ER...in so much pain and distended to about 5-6 months pregnant and I had only mini saltines and some broth from my hisbands chili. Sent my mom and sister a picure of my belly and its just not right...sticking out more on right side, very lop-sided, and thats all I had to eat all day....Probably not worth it, but I icannot take this anymore...

Lizzie

Lizzie,

MY LORD!!!!!!!!!!!!! I feel so bad for you. The test Peltz mentioned does sound more thorough. I think the Mayo CLinic has the small bowel manometry if the CC does not. You remind me of me chasing all about for help, and docs and nurses getting all pissed off because they don't get it. Instead of saying we don't get it but we will find you someone who does, they blame it on the patient. At least CC has a plan, but why would you not vomit up the camera if vomiting is what happens to you? Can't they wrap their head around that concept? MY PRAYERS are with you.

Jenise,

I got that whole bunch of crap about "Oh, you just don't want to go home, you like being in the hosptial" when I had my disaster surgery in 2006. Some of these same lines are being said to you. Do they teach these lines in medical and nursing school? They are carbon copies of one another. Jeeze! Many, not all, residents act the way they do because they are INSECURE and are trying to one-up's themselves by putting you on the defensive. All you have to say is "I live in my body; I know what I am feeling. YOU do not." (say it calmly and casually and it cuts them to the quick.) They can't argue with that because they do not live in your body. Try this line next time you need it. ANY cramping after eating, no matter how fleeting, is still ileus. GO SLOW; TELL THEM IF THEY RUSH YOU, YOU MAY HAVE TO COME BACK (If they don't want that they'll get the message.) I wish you the best. Isn't it terrible how sick people have to defend themselves. MEdical people are supposed to take care of US!

I have come to a giant conclusion with all of our experiences. I honestly do not think any doc or any nurse has a full understanding of the gut system. Most are honest and really try to help people. Others like I tangled with, (my original surgeons have no morals, scruples and are simply in it for the money. Be assured the type I tangled with are few and far between.) BUt I think, even at best, the gut system is soooo complex that I really don't think anyone totally gets it!

So stick to your guns everyone. SOcial Security now thinks I work for the Hartford Insurance Company. That is the source of my other disability retirement check. So, now I need to deal with that. I need to say, NO I don't work for the Hartford, I get checks from them due to ......then I'll reel off my whole story, and the clerk will give up in utter confusion.

Should be a fun day! Rosemary

Jenise,

Glad your good nurse is back on duty tonight. That makes all the difference in the world! Glad to hear your bowel sounds are increasing. I can see why you want to poo and go home.

Lizzie, Good luck at the ER. Sorry I missed this in your post; I was trying to check in so fast. Rosemary

Jenise,

Great advice from Amey. Docs can write things up in such a way as to get you more time in the hospital covered by your insurance.

Lizzie,

I just had a brain storm. See what they do for you in the ER. Then see your doc this week as you have scheduled. Then if nobody seems to know what to do, see if CC has a patient advocate. At Lahey, where they knew what to do to save me and the doc said he would, I did not hear back in the two week window of time he mentioned. I called at the end of that 2 weeks and his secretary (of the time) was talking about me waiting two months! I told her that would make 9 months I'd be unable to eat and I wouldn't be strong enough for the surgery. She just got all pissed off. So I called the hospital's patient advocate and she talked with the surgeon. He called the very next day and I had surgery the next week. Patient advocates are great and most hospitals employ one. However, they are usually well-kept secrets. Good Luck. Let us know how it goes. Rosemary

Amey, I didn't see him again tonight.. but left a message that I need to see him. I'd even be happy seeing Jose.. I'd just like to one of them. You're right about insurance companies, I just rechecked and my approval is for discharge on the 15th, so wish they would just not worry about it so much! The unit has emptied out a lot.

Rosemary, yes - they do flush it out, but it is not squeaky clean. However, that means I have a pretty empty colon, and it needs food before it has stool! I ate all meals today, and had an appetite. I did get cramps.. but they did go away on their own. You have so many great tips to share with Lizzie ( and all of us) You have moved on with your life, enjoying cruises when your not busy with your case. Most likely, most of us will move on once we fully recover, so to have you here is a blessing for the site.

I can hear my gut tonight! It just started... and it's loud, I feel like it saying "I'm awake!". I also had so pretty bad gas pains, but passed no gas.

I was lying here thinking.. if I'll even know really poo! Maybe the sensation is different with the rectopexy and rectocele repairs. I feel some sort of rectal pressure.. but more towards my tailbone. Do I need to strain ANY or will it just come out? I have always strained... but now I'm awake not knowing if I'll even know I have to poo!

Hi Jenise,

Glad they flushed you out. I wouldn't worry too much about how "pooing" will be, you will find out when it happens. When you do get the urge, grab a newspaper or book, coffee and Orange juice, sit on the toilet and just relax or plug in some music on a head set and just see what happens. Thinking about it may make things worse. If it does not go well, it's not all in your head no matter what anyone may say to you. But there is a small element in all of us that may make us subconsiously tighten if we do think about it. I HOPE it goes fine.

I'm glad you see me as an inspiration. I have moved on in so many ways, but am really still stuck emotionally due to all of my 2006 original surgery being done without any need beyond the draining of the benign right ovarian cyst. Even if the law suit is settled and one more is chalked up on their roster of suits, they will still go on doing this template surgery on people. I don't think my soul could rest until I MAKE THEM STOP harming people needlessly. If mine were an isolated case, it wouldn't be AS unnerving, but all their other suits are for past patterns reflected in my suit. I have learned that if they do settle with me, it may come with a "gag order." Meaning that I am sworn to "secrecy." THis isn't what I want! But if I then elect to go to trial instead, then there is a chance the defense could pay off my experts to testify against me and I could LOSE! So, either way everyone loses, but at least I'm doing what I can. Then will just need to let go. Really need the Jan. 7 cruise. Gotta stay well. Good luck to you you. Rosemary

Lizzie,

Yeah, it's time to take action. Being discharged from the ER and throwing up more is not the way to go. In your weakened state, easier said than done, but you really need to find someone with a handle on all of this. Maybe have your husband, mom, and MIL talk to the patient advocate or the doc on your behalf. What ever is done to you next for surgery HAS to work. I pray for you. Rosemary

Lizzie,

Something Amey said gave me an idea. Yes, do go to another ER. Tell them you've been vomiting since your surgery, (now ages ago). Simply ask for an upright and supine (lying down) basic xray. It takes all of 5 minutes. The radiologist can tell by the air fluid levels in your small and large bowel if you are obstructing.

Take all your relatives and friends with you they can help insist that you get some help.

Just for my own clairification, Is this the Cleveland Clinic ER that keeps sending you home?

Rosemary

Lizzie,

I think I missed something here, are you supposed to be going back to work amongst all the undiagnosed reasons for distension, vomiting, etc.? Just say NO! and get a doctor's note. Good Grief!!! Rosemary

Rosemary, Jenise is right, it's not CC. Jenise, your uro-gyn sounds like a great guy! so sweet of him to calm you down like this and be so understanding! i know you want out, believe me, i know EXACTLY how you feel, i wanted so desperately to get out of there. although my drs and nursing staff were really great and i truly love them, i got SO bored and frustrated being at the hosp that i wanted to screem!!! it'll happen soon, patience honey.. praying for a HUGE bm to come soon!!