TOTAL COLECTOMY PART 29

Hi guys,

Rosemary, no its no CC that keeps sending me home, its the ER that I am supposed to go to in case I am admitted since its where my surgeon works out of and where I have had all my surgeries. There are a couple more in the area, probably three within 30 min, but I just do not know what they will do. I finally after taking almost 200 ml+ of MOM last night was able to have some reliefof the distension. I took a picture of my belly to my rectal therapist (who today stopped therapy) and she could not believe what my abdomen looks like and she could even see in the picture the lop-sidedness to the right side. She does not think right now with all my spasms in the rectum that I can handle any therapy right now. The vomiting worries me too, believe me, and I knew it would happen because it always does. I am supposed to start no laxatives today, but I am still in pain in my right side and I do not know how I am supposed to make it 5 days with no laxatives, trying to eat, etc when this keeps happening. I am afraid what could happen...perforate, etc. Yes, I am supposed to be headed back to work Monday....my FMLA has run out and until somone can make a plan for me I will just try and go back, but even my therapist agrees its inevitable that something is going to happen. I do not want to leave my work hanging so I will go back, and once I hear something try and stay until they can replace me. I am a full-time nurse in a specialized area and I know it will not be easy to replace/train someone to do what I do and they said they can no longer try and fill my shifts so I will have to leave and/or be terminated. I do not know what to do anymore guys...I hear everything your sayin and I cried all last night because I feel the same way, but I do not know what to do. The doctor in the ER never even came in to see me, just the PA, and they said all they can do is try and get me comfortable.

Jenise- Hang in there honey, I know how frustrated you are....I had an ileus, which that what it sounds like what you have going on, and it lasted nine dyas before I had any activity in my bowels and bowel movements. Its very normal, but frustrating and I am sorry your doctor did not tell you he was leaving on vacation. I feel my surgeon here has given up on me so I know how it feels, but yours will be back and thank goodness your uro/gyn was so sweet to talk to you and calm you down a little. These surgeries throw your emotions for a ride....your doing wonderful honey and just keep that chin up. Your bowels have been through the ringer and just need a litttle extra TLC. Praying for you....always.

Jen- Whats going on dear???

Love to all the rest fo you.

Lizzie

Jenise,

If you still have ileus I am surprised they have put you on Miralax or any laxative. But, they are your docs. SO glad you connected with someone comforting; THat is a good idea, just go to the gift shop, the coffee shop, sort of tour about the place. Use your real shoes, he's right, makes you feel less like a patient. As far as I know, if you still have some ileus you won't poop because the peristalisis has to be fully awake in your small intestine before your colon can start working. Good luck with all this. Amey is right, try and relax. ( Easier said than done I know.)

Lizzie,

Glad to hear it's not CC kicking you out, I was about ready to give up. Cleveland Clinic is supposed to be top notch! Best of luck. Did you call the doc you are supposed to see this Thursday at CC and tell her you are worse? Good luck going back to work. I really feel for you, WOW! Praying for you.

Rosemary

Lizzie, I feel so bad for you.  I can understand how frustrated you are feeling, and I pray that someone at Cleveland Clinic will be able to actually help you on Thursday.  I believe that Cleveland Clinic has the most skilled doctors around. 

 

My surgeon for my colectomy was Dr. Wexner from Cleveland Clinic Florida, and now he is going to do my ileostomy surgery, hopefully in June.  He called me this morning and talked with me about the risks of my surgery in June.  He is very kind, and does not pull any punches.  He told me that it's going to be a very complex and critical surgery, and that my surgeon at home did the best that he could do for me this past May and June with my leg bag.  We have to be as certain as can be that my small intestines have healed, before surgery in June, or I could have to live this way or worse for the rest of my life.

 

It is alot for me to digest and I don't really talk about it, except for this message board, my husband, and my counselor.  My tube was obstructed with hamburger from spaghetti, for the past 3 days.  My husband did his best to flush it out, and it kept getting worse before better.  We were both nervous wrecks.

 

I have been withdrawing alot lately and just want to leave everything, but read a novel in a chair, alone and quiet.  I'm working part-time again, through January 19th.  It's been a long tough road.

 

butterfly

Jen,

Glad you're home; you must be just soready to sleep in your own bed. I hope your recovery is smooth from now on.

Jenise,

Glad you got out and walked the halls. I'm guessing your uro-gyn could see the handwriting on the walls and likely told everyone to stop bugging you. THAT is a good thing. Good luck. At some point that Miralax should kick in. Glad there's no nausea. BEST OF LUCK. PRAYING YOU HAVE A HUGE RELIEVING BM IN THE A.M.

Rosemary

Jenise I am sorry you are having so many problems with having a bm. It really sounds like you have an ileus developing. I would think your bowels should have started working by now especially with the Miralax. Hopefully things will get moving soon. I know its hards being in the hospital trust me I know. I think I have spent 24 days total and it is not fun. I am praying that things get better for you soon. We are here for you.

Jen

Hey everyone...

Well today was an ok day. I finally from the over 200 ml + of MOM, but then today began the no laxatives. It will be a total of 7 days without before the test is over. I tried some cream soup this afternoon and some turley tonight and did not have luck with either of them...vomited up both, but was able to keep a little ice cream and few saltines down tonight although I still feel very nauseated and pain in my right lower belly. I will leave at 8ish on Thursday am with my sister and head to Cleveland and my appt is at 130pm. I honestly wish I would be admitted for this test becuase I am so nervous as to what is going to happen if I try and eat??? and really how much longer can my body take this reaction. I have had no BM since this am when the laxatives kicked in....I have a lot of pressur ein my belly tonight and pain all over. My chest hurts, i feel weak and dehydrated. I guess the reason the ER keeps kicking me out is that I keep seeing the same doctor and he does not know what to do. My surgeon is aware and I feel like he has given up on me and knowing what to do with me. I feel helpless. Like Lori, I have not told anyone besides my family what has been going on....I just try and deal with it like I am ok. I have to go back to work for now and I miss my pts terribly, but I know the end of this too is inevitable. I need to put my health first, but I need to give them time to replace me...BUT FIRST I need to find someone to help me.

Lori- I am glad that Dr. Wexner has called you and gone over the surgery for June with risks and all....you are in a fragile condition and I know they want you to be in the best position to have more surgery. I pray for you always and think of you so often. I know how you feel withdrawn. I put on a happy face for everyone except those closest to me (family, husband) and let everyone else think everything is ok. I know they would think I am crazy to have another surgery as they feel they lose me with each recovery, but you al on here are the only one who understand exactly what position we are all in. Love you honey...

Jenise- I am feeling a good BM coming for you girl!!!! I am glad they have backed off on the word and the pressure of the idea and that it will happen when your body is ready. Thise darn ileus's can be so tricky and frustrating, but bowel sounds are great news!!! I am praying and looking constantly to see the good news! Praying for you....

Jen- I am glad you are home and healing....just rest, rest, rest and take care of you. do not think about being readmitted, but try and think of how you can leep yourself going to stay away and out of there. The reglan made me very tired, but at least you do not have the shaky feelings it can give some people. I had like tardive dykinesia from that pill, but it works wonders for all and I hope it sontinues to do you good. Keep hydrated, rest, and eat!!!! You will feel some strength, but it will take time. I understand their concern over infection and inpt they can easily monitor that.....but I understand your feelings of liking having the extra umph it gives you. Hope your recovery is smooth sailing from here.

Hodaya- How you feeling today honey??

Rosemary and Amey- Thanks for all your love and support. You two are amazing and I wish you were closer to help me advocate for myself!!!! Hope you both have had a wonderful day!!!

Janie- Good to hear from you sweetie!!! how are you doing love??? Is the Miralax still working for you???

Marisa?? how was the testing, Judy, Christy....thinking of you.

Lizzie

Lizzie,

Call them at CC and ask if it's possible that you be admitted for the test. (If you use ask this way, it usually evokes the response "Sure anything is possible.") (I think this is the test where you swallow the camera.) Tell them (Again) that vomiting is what you do daily and that during the 7 days of the test you will LIKELY vomit. If you vomit the camera up, it will invalidate the test. BUT MORE IMPORTANTLY, there have been instances of the camera getting stuck in the small intestine (I refer to some cases I was told of by a surgeon that happened at Mass General while they were trying to figure out MY damages from my 2006 surgery. They were not having me swallow a camera, but for whatever reason one of the surgeons was just chatting with me about some patient that happened to. They had to do immediate surgery to go get the camera. IF you have a blockage, the camera will likely get stuck. TELL them this, they can't deny the possibility.)

YOU of all people SHOULD be admitted for this test. Ask them, how big is the camera? WIll it cause damage if (when) I vomit it up? Remind them that you live 5 hours away. Remind them that all your local ER does is send you home no matter what is going on. Remind them that you are only 29 and that you have serious potential due to your current state. (In other words appeal to their sense of, I hate to say the word, but LIABILITY!) Assure them of your confidence in them that if you are there for the test and something goes wrong, you are confident that they can deal with it. (now you are appealing to their sense of your TRUST IN THEM.) This is a wicked game to HAVE to play when you are in a weakened state, but trust me, I've learned all the angles.

If they won't admit you, could you stay in a hotel, motel, or guest house nearby them. All hospitals have lists of nearby accommodations.

This is a forum where we can be honest with one another. I am not saying this to undermine your efforts to tidy up things at work and tie up loose ends as that is the honorable thing to do, however, I just honestly don't see how you're going to be ABLE to work in your present state. WHY would they not cut you some slack? If ANY of us said to an employer "every time I eat I vomit," MOST employers would give us an extension on our leave until we got the vomiting issue resolved. You know your employment situation and needs better than any of us, but this is just my THOUGHT and input. Put YOU first, not them. End of sermon.

My heart goes out to you, Rosemary

Jenise I feel your pain with not being able to sleep. During my second stay at the hospital I would literally stay awake sometimes 20-22 hours a day. It was horrible. Just try to stay strong and walk, walk, walk.

They nurse woke me up one morning at 5am, during this last stay at the hospital, just to weigh me....woke me up to see how much I WEIGHED! INSANE!

Jen

Jen, I can't believe they woke you up just to weigh you! Did you gain any weight back this last time you were in the hospital? I really want to weigh myself..

SOOOOOO... this AM I had a SMALL, Very Small BM. I'm constipated.. it's hard. I know several people looked and so far.. no discharge. They just tripled dosed me with MOM. Removing my sigmoid.. should make me have diarrhea, not constipation. I hope they don't realize now after the fact.. that maybe the whole thing should have went...

The rectal pressure is still horrible.

Rosemary, I agree. Jenise - A warm water enema might feel like heaven and it would decrease the pressure. Can you call your nurse into your room and ask her to call the dr and ask about an enema.

Oh Ladies.. I'm soooooooooo much better!

Rosemary, you hit the nail on the head.. this is exactly what was happening!

I had terrible diarrhea, and it was pouring out one side of my butt! When I wipes, I felt a mass of hard stool. I told the nurse and within 30 minutes my doctor came. He apologized for being away - family emergency, not a vacation.. but anyway.. he said my entire colon was filled from end to end with golf ball size fecal matter, and they don't flush it all out... these balls traveled to the rectum and became impacted. It was a stinky, messy job.. that he cleaned out. He was very surprised at the amount. My butt is sore and burning from the extraction and diarrhea, but the rectal pressure is GONE! I do need to stay another day or two to make sure it doesn't happen again, but he is pretty sure I'll be going home tomorrow. He asked if I wanted to see what he extracted, and I looked.. it was pile larger then a softball.

Amey, you can use enemas right after surgery or does the site have to heal first?

My doctor does not think I will have issues with constipation, this is a case where a mechanical bowel prep would have been beneficial.

I'm in good spirits.. I see the light at the end of the tunnel.

Amey.. oh bad thing is.. Dr, Frattini is so darn good looking! Embarrassing to have to have him extract my rectum.. but I just gotta get over that! The nurse came in after and said she would gladly take my place! LOL I told he I wasn't angry he went away, just that I felt I was deserted. He is coming back tonight to check on me... so I'm glad he cares.

I bought the butt cream Janie mentioned.. but it's home. They gave me something, but the butt burn is bad. Hubby and I walked to McDonald's (on hosp. site) to buy an ice cream. My mood is a million times better!