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Total Colectomy Part 37

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Posted 9/12/2010 1:05 AM (GMT 0)
Hodaya,

How did it go with the attorney about the work situation?

Tracy,

How is the school year going?

Rosemary
Posted 9/12/2010 2:59 AM (GMT 0)

Happy Weekend to you all!

 

Little update on Lizzie...While there are ups and downs, she is doing unbelievably well for being three weeks post-op. The ileostomy is working, she hasn't had any problems with obstructions, and I do believe she is going to do incredibly well! Recovering and healing completely will take time, as her body never had the chance to fully recover from previous surgeries. The fatigue and pain will get better with time, and her strength was increasing during the time I was there. She is able to eat- right now she doesn't have much of an appetite, she does get full quickly, and of course there are days when food just doesn't sit right, but all of that will get better. Bottom line is that she will have her life back! And she is making plans for the future with much excitement and anticipation!! Continue to pray for complete healing for her, that she would be able to eat without discomfort, figure out which foods settle well, and that she would get all the rest she needs for a flawless recovery!

 

This being September 11th, I just want to take a moment to remember the many lives that were lost, and the heroes we have in the US military, fire and police departments, EMTs, paramedics, and everyone else who works to protect us, no matter what the cost. We are so blessed. God bless, and God bless America.

 

Love and prayers to you all! Have a wonderful night!

 

Allie

Posted 9/12/2010 6:20 AM (GMT 0)
Allie,

how are you doing? have you had your appontment with the GI doc/surgeon yet?
In case of mine, I am still miserable and my other progressing issues become overwhelming. I will be tested for neuroendocrine tumor/carcinoid but unfortunately I have not had a chance yet since my blood panels are still altered by the immune reaction I still have symptoms from. I am really frustrated and I feel that I physically decline with each day, and of course I am not doing great emotionally.
I am just so worn out, and I am so angry that I this darn immune therapy still causes problems, not only pain-wise, but I can't go on with testing due to the altered panels. And I also have serious trouble with my general doc who does not believe me and that the values which were drawn on the day I developed the meninigitis are falsified.
He does blieve in the endocrinologist I saw at the same cinic and who said that everything was normal and that I even did not need my thyroid medication since he did his interpretation with the falsified results. In fact I got to know that he accused my of having an eating disorder and reducing my weight by taking thyroid medication. 1. this does not work and 2. I have not lose anything.
I am so stressed and tired from fighting this neverending battle with the ignorance of docs.

My GI doc agreed in doing testing since I asked the Italian expert who diagnosed me if my symptoms warranted further clarifying and he said yes and which test could be done.

Sarah

Post Edited (pelztier86) : 9/12/2010 10:27:48 AM (GMT-6)

Posted 9/12/2010 4:57 PM (GMT 0)
Alli,

Great news on Lizzie. Praying she continues to heal well as she is certainly off in the right direction.
She will truly be a miracle recovery. So glad all is working well! Thanks for the update.

Peltz,
I will continue to pray for you in your struggles.

911 prayer for all those who were victim and their loved ones.

Rosemary
Posted 9/12/2010 7:14 PM (GMT 0)
hey girls,

been away b/c of the hollidays, then my computer broke and had it fixed just today. so much to catch up on.

thanks so much everyone for your support re my job/jerky boss. if y'all recall, i was telling you how my boss said he's spoke to my dr and she agreed with him about the hrs i should work.... he's such a lier and not a good one :p lol. well she said he did call her, but said she did not agree with him AT ALL, so after i talked to her, she said she'll give me a more SPECIFIC letter that sais the exact hrs i want to work now. but i don't know what to do, he's out of the country till Oct 1st.

Jenise, i also wish i don't have to see or speek with the guy ever again, BUT if he agrees to my terms, then i'll have to go back :((( but even if so, i'll keep looking for a new job. i already had phonecalls from those i sent my resume to, and there maybe a job interview tomorrow, i'll have an answer tomorrow. i did worn them i still have issues with my current job, so i can't promise i can start right away. she said she wanted to see me anyway.

Rosemary, glad you liked my "book" ;) a trip to Africa..... how exciting!!!!

Aolson, i've never tried xifanax. anyways, i think you should def insist on a defecography test. the zits test is NOT accurate as to the pelvic, cause it depends on too many factors.... like for example, you could have an incomplete bm one day, then it can bother you for 3 more days and you will not be able to make it out on your own, then on the 4th day you'll have the rest out and on the 5th day you go for the x ray. all the dr sees is that at one point the markers were in the sigmoid (for instance), then he sees they're gone, BUT he didn't see what happened in between x rays and how uncomfortable you've been for days.. so i think its very important to see the evacuation proccess on real time with defecography!

the surgeons job is to do the surgery. if he gets the needed info from the GI doc, then there's not much left for him to do but surgery. the iquiry job is for the GI, the surgeon does what he knows best and that's it. surgeons don't want to see you much longer after the surgery, unless you need more surgery, something you surely don't want to have. i wish you all the best both with your surgery and school :) keep us posted.

cookie, thanks hon. i feel a lot better now. after thinking of what he said, i realized he said that first of all, cuz he's a jerk, secod it was only to defend him self and scare me. but he doesn't realize the dr is on my side and so is the law. about probiotics, i tried them many times, it never helped me.

Allie, i'm SO VERY HAPPY to hear Lizzie is improving and getting better :) :) :) :) SO SO thrilling to hear she's in good spirit and thinking of the future.. very excited to hear all this! does her stoma stick out enough? i don't know how to help with the indended skin.. so sorry, but maybe Rosemary's ideas can work? and i'm sure the stoma nurse may also have some good ideas. i hope it works out for her soon. give her our love ♥♥

Marisa, how long has it been since that animal was locked in? they can't let someone like that out ever, it doesn't make any sense.... can you and your family appeal?? so sorry you have to face him.

Jenis hon, i CANNOT believe you're having more surgery!! gosh girl, i'm so sorry, but i wish you the best of luck and hope it really works this time and you dont need more surgeries.

dear Janie, so good to hear from you! missed you too so much ♥♥ i put splenda in my activia today, thought it won't hurt to try.. i think it helped :)
Posted 9/12/2010 8:12 PM (GMT 0)
Pamela, how you're doing?? i believe your surgery is just in few days..?? not sure when exactly, but i wish you all the best honey, hope you keep us posted, thinking of you.
Posted 9/13/2010 12:11 AM (GMT 0)
Hi everyone.....Hi Pelztier Hi Hodaya.....Sorry its been so long since i have posted...how is everyone doing? Poor Lizzie, i need to send her a note on facebook...that poor woman just never gets a break, but her strength absolutely blows me away. I will be in touch, i havent posted in the forums in almost a year(yikes!)
Posted 9/13/2010 12:39 AM (GMT 0)
Hodaya,

Good, your doc is on your side re: the hours you feel you can work. AND you have an interview already....good for you; you are on your way to the life you want, need, and deserve. Good for you.

I have such positive feelings that Lizzie is going to do well.

amcgleno, we've not met. I went through a 13-month ordeal like Lizzie's multi-year ordeal. So far I'm doing OK, wrap wood. As soon as you catch up on the posts, you will see that Lizzie is FINALLY doing well. I will try to catch up on your posts. Welcome back to the forum.

Rosemary
Posted 9/13/2010 6:45 AM (GMT 0)
Hi Amanda (I think that's your real name, isn't it?)

how are you doing with your CIP?
I am doing pretty miserable since I have developed new and progressing issues in addition to my bowel/bladder issues from the CIP.
Posted 9/13/2010 3:03 PM (GMT 0)
Allie - Thanks for the update on Lizzie. That's great to hear she is doing so well. Still praying for her.

Sarah - Really sorry you are feeling so unhappy. Praying that the docs are soon able to help you.

Hodaya - Glad you are feeling better and good to hear that your doc is on your side.

Thanks for the information people have given about Splenda. Will definitely give it a try.
Posted 9/13/2010 6:49 PM (GMT 0)
Just doing a quick checkin. Talked to the victim coordinator today and Jason has a lot of support coming to this hearing. I told her she better make sure she has a lot of security there. It is going to be so hard and I will be glad when this is all over. My brother was 23 when he was murdered in his own home by his "friends" Because of all the plea bargining the most Jason can serve in 15 yrs. Sucks, but what do you do. I was just wondering today if I would really get in too much trouble if I punched the guy! That would help me more than anything. If I am fast and can just get one punch in it would be great!!

Well better go and work like usual.

Getting so darn nervous about Thurs. Cant eat......just feel like vomitting.
Posted 9/13/2010 7:22 PM (GMT 0)
yeah that really sucks Marisa. i don't understand how they can let a murderer out at all, there's no sense in this. i hope you stay strong to make through this. my thoughts and prayers are with you and your family through this hard time.
Posted 9/13/2010 8:37 PM (GMT 0)
cookie74
Sorry for not replying sooner but I just got out of a 4 day stay at the hospital.  The flu caused my bowels to get the ilisus again so in went the NG tube again, got out last night, feeling a bit shakey and have a very raw throat, but better than when I went in so now I am at 120 lbs...no food now eating to try a gain.  Yes I go for my neurologist appt and MRI on the same day and lets hope we are both fine... but they have to find out what the heck makes me pass out all the time.

 Hope everyone is well as I am too tired to catch up so will do that later..

Leslie

Posted 9/14/2010 12:11 AM (GMT 0)
Oh, Leslie. The flu made you go into ileus? WOW! Sure hope you feel better soon. Rosemary
Posted 9/14/2010 1:14 AM (GMT 0)
I'm 8 days away from surgery and I'm sort of freaking out. It seems like no one on here has had a good experience with their surgery and it's really scaring me. I work in surgery, doing mostly colorectal and I know that my surgeon is also my friend and wouldn't steer me in the wrong direction, but he can't tell the future. I'm thinking about postponing it. Am I being completely irrational?
Posted 9/14/2010 2:35 AM (GMT 0)
Rosemary,   Gosh I don't know what the answer is but I sure do seem to get a lot of them.  Only ate a little bit of turkey today so we shall see .....its got to get better ya know.  I have to believe that.  Night

Leslie

Posted 9/14/2010 3:19 AM (GMT 0)
Hope it gets better Leslie. I read one time that spontaneous ileus can be caused by severe electrolyte imbalance (if the ileus is not post surgical). Do you get your electrolytes checked?

J-Rex,

I'm sorry I must have missed your original post. What are you having done? BE SURE whatever it is that you are thoroughly worked up so that whatever you are having done is the right thing to do. I had what turned out to be unneeded surgery (wrong dx not known to me at the time that it was wrong. went on 3 consults they all said the same thing, the wrong thing.). Then the wrong surgery was done wrong, along with multiple unconsented procedures (for docs' income).....they are sure not all like that, but my original ones were....I lost the use of my colon, and rectum permanently and the use of my small bowel for 7 months. I was LUCKY to find a doc who would fix my small intestine and do a needed ileostomy made necessary by the original unneeded surgery. Friend or not, go to the court house of the city in which your surgeon practices and go to the civil superior court clerks office. Ask to see suits on this person. If there are none and you have been thoroughly worked up and diagnosed, all options have been explored and you feel confident, then go for it. If there is doubt in your mind, then postpone until you are sure.

We are all on here because we have had issues and have not yet moved on. THere are many success stories and the people have moved on. Even some of or all of us are having degrees of success relative to what we had so take what you read with a grain of salt, but I do hear what you're saying, we have all sure had our share. Good luck to you. Sincerely, Rosemary
Posted 9/14/2010 3:52 AM (GMT 0)
esoR
I am sure that they check everything, even got one bag of Potassium IV fluid bag.  I drink a little bit of gatorade every day to help with that, so I was amazed you siad that.  Because that is exactly what I was thinking, so I will try to drink a bit more of it per day and see if that helps.  The only ohter thing I drink everyday all day long is water with the exception of coffee in the morn.    So I guess great minds think alike..Night

Leslie

Posted 9/14/2010 7:05 AM (GMT 0)
gosh Leslie.... so sorry to hear that, hope drs can figure out why you keep having those ileuses. i think you should ask for that ct scan Rosemary once mentioned, my dr also mentioned it after my ileo op, but things worked out, so we didn't do it eventually. i forgot the name of it... tomographic or something like that..? Rosemary, what is the exact name of this ct to reveal narrowing in the small intestine? i hope you feel better soon Leslie.

J Rex, i can understand you're being scared, it's a major surgery and it's only natural to be scared, but you're doing the right thing! staying the way you are is even scarier - it will only get worse as time goes by and the more you postpone it you risk more damage to your pelvic and other issues.. so the sooner the better. the absolute majority of the ppl here benefited from this surgery, it improved things. some of us may still have issues, but in any case, it's still better than before surgery for all of us. best of luck to you hon! sending good thoughts your way (((HUGS)))

i'm off for a job interview.
Posted 9/14/2010 4:15 PM (GMT 0)
Hi ladies.  Although I haven't been posting, I am still here reading posts and praying for those who need it.

J-Rex - One of the reasons I'm keeping in touch is to be able to encourage those who are about to have surgery.  As I recall, you are scheduled for a total colectomy.  My surgery was July 28th, a subtotal (leaving only 2 inches of colon).  My surgery was totally successful.  After decades of suffering with  colonic inertia (undiagnosed until this year) I am now normal.  And I am very grateful to have had the surgery.   I came back to work full time 12 days post op and have had no complications.  It's good that you have a surgeon that you have confidence in.  That is so important.  My surgeon was not a colo-rectal surgeon but rather a general surgeon who has an outstanding reputation as a surgeon and as a caring physician.

If you have questions or concerns, please do post.  We are all here for you.

Val

Posted 9/14/2010 5:19 PM (GMT 0)
Leslie and Hodaya,

It was a CT enterography that I had to check for narrowings. In my case, none showed, thankfully. VERY IMPORTANT, they had me drink just plain water about a quart of it to distend my small intestine. Any contrast with sweet or a heavier consistency would go right through into the bag so be sure they have you drink plain water contrast. Go fasting as that water will really fill you. They have you drink a quart in 30 mins. Stop before you puke, then they can get some good pics. They also so IV iodine contrast to check for the blood flow to the small intestine. Guess mine was all good.

So that is how they checked me for narrowings. I had just had 2 food blockages on mashed potato that is why they checked me. THis test was done long after I'd passed the blockages with hot tea and grape juice. I had simply eaten too much mashed potato with too little liquid. So was an error on my part rather than anything wrong.

Rosemary
Posted 9/14/2010 7:27 PM (GMT 0)

Hi Everyone,

 

Please keep Lizzie in your prayers. She has tried everything she can, but she is still having leaks due to the indention from her first ileostomy. She also has a bump that resembles a polyp on the side of her stoma at the skin line, which is relatively new. Because of the frequent leaks, her body is on high alert and she isn't sleeping much at all. She is so exhausted. Pray that she would be able to rest and that these leaks would stop! She has an appointment with the stoma nurse on Thursday, and her follow-up with Dr. Stocchi in Cleveland is on the 24th. At this point, she kinda feels that a revision (or moving the stoma to the left side) is in her future :( Good news is that she is not obstructing! She will do great...right now it's a matter of figuring out what to do about the stoma.

 

Sarah - I am so sorry you are still experiencing the side effects of the immune therapy. How long do they expect the side effects to continue? Are there any medications they can give you to lessen your body's reaction? It is not fair that you have to fight these doctors when you are clearly doing everything in your power to get yourself well. I am so sorry your general doc accused you of using thyroid medication to lose weight. Being a doctor, he should know that won't work. Is there any way that you would be able to return to Italy and be treated by the expert there?

 

I have not been feeling well. My therapist discontinued biofeedback yesterday because it is making my symptoms so much worse. Motility continues to slow, I'm eating less, and the pain and spasms are getting worse. My follow-up appointment with my GI doc isn't until October 7th; I called today to get an earlier appointment, but he doesn't have any earlier openings at the moment, so they put me on the waiting list for when another patient cancels their appointment. The PT referred me to a neurologist for testing on the autonomic nervous system and vagus nerve. That testing may or may not get done here...My GI doc is wonderful, and he feels that it is in my best interest to go back to Mayo to see Dr. Camilleri, who specializes in enteric neurology, and Mayo would want to do all of their own neuro testing anyway.

 

Honestly, I just want an end ileostomy and my rectum removed. I do not want this to drag on for years like it did with my total colectomy (which should have been done three years sooner than it was).  I guess that's a downside of being young! No one wants to do big surgeries! It's good that they're thorough in investigating other avenues besides surgery, but at some point enough is enough. I have a few questions for you...when did they do your ileostomy? How old were you? Did they do a loop first, or go straight to an end? Has your ileostomy markedly improved bloating/distention and pain? Getting my parents on board with me going back to Mayo and eventually having more surgery is going to be very hard. My mom has been a nurse for about 40 years, so she knows way too much for my own good in this situation. Being an oncology nurse, she has only seen the ostomies that had to be done due to damage from radiation treatment. Those poor people have a lot of problems, and because of her experience, she doesn't want me to have to go down the ostomy road, even though I feel it will help me have some quality of life. My health crashed at an inconvenient time in terms of education, so I still live at home, I am still on their insurance (but I will age off of it pretty soon), and my parents have that, "as long as you live under our roof, you do as we say" mentality. Don't get me wrong- I love my parents, and they have taken great care of me. I just need them to be ok with more surgery, if that is what I need. Are there any articles you know of that talk about ileostomy as a successful treatment for motility disorders that haven't responded to other treatments? And to anyone else reading this, your ideas are welcomed and much appreciated!

 

Marisa - I cannot even being to imagine what you are going through as Thursday approaches. Many, many prayers are with you and your family. Praying the judge gives this man life in prison for taking another life.

 

Hodaya - Praying for a great new job for you. You deserve it- to have a job you love, and a boss who treats you well. Life is too short! Go girl!

 

Rosemary - I hope you get an online photo album set up before you leave on your Africa trip so you can upload throughout! How exciting!

 

Sorry for the novel...love, prayers, and hugs to all!

 

Allie

Posted 9/14/2010 8:14 PM (GMT 0)
Allie,

WOW! As I don't have a motility issue I don't know if an ileostomy would help.. BUT it did help Hodaya and she had some motility issue (I think) she will chime in to clarify if I'm wrong. So it may.

I hear what you're saying about your parents, loving them, but needing to just get YOU straightened out then move on with your life.

As long as Lizzie's ileo is working I sure hope she does not have to have her stoma moved as tampering with the success of finally getting something working may be disastrous. The stoma nurse should be able to find some sort of appliance for her leak issue. THEN, the polyp issue on the side of the stoma, I think there is some type of growth that sometimes occurs, but it is treated with a bit of silver nitrate and then it (just the growth) sort of shrinks down and the stoma looks normal. I PRAY she does not need any more surgery.

Good luck.

A friend who is a techie is visiting this week, so I will ask if I can get some sort of photos to you all. It would be fun.

You're right, life is too short to stay stuck in all this forever. I pray everyone can get their issues dealt with and move on. I pray I stay well as I have been and can continue "moving on" however it has to be done.

Rosemary
Posted 9/14/2010 9:09 PM (GMT 0)
Hi Val, 

I see that you had the exact same surgery as I (April 2009) and yet we have had such different results!  I am very happy that things worked out well for you but I have a few questions (for you and others reading this):

My doctors usually act like I should have known that having a SubTotal Colectomy and only leaving 2" of colon would result in 6-8 bowel movements/day.  I imagine they must have removed your ileo-cecal valve also; I think it is pretty difficult to leave it intact with this type of surgery.  Anyway, I could probably live with 6-8 BM's/day; but somedays it is 15-20 which causes much pain, bleeding, rectal infections, etc..  Do you have any of these types of problems?  Also, from what I understand we have mostly liquid food (effluent) in our small intestines so without a colon it is natural for this liquid to just "pour" thru us.  Many times, what I eat comes out within 20 minutes!  Sorry to be so graphic but I have basically been home-bound for since my April 2009 surgery and I am miserable!  I have been given many suggestions on how to "slow my system" down (Calcium Carbonate, Lomotil, White Rice, White Bread, Mashed Potatos).  These things do work but then I get SIBO (small intestinal bacterial overgrowth) and have to take an anti-biotic called Xifaxan.  My insurance co. will only authorize 9 tablets/mo. and I need to take it almost daily if I take these "binding" foods or medications!  I just can't win; it is either live with diarrhea up to 20 x's/day or "slow things down" and get SIBO which makes me feel toxic; very ill, feverish and very weak!  My colo-rectal surgeon has ordered a small bowel follow-thru (upper GI test) for tomorrow morning.  He can access the results almost immediately so 3 hours following the test, I have an appointment with him to discuss options.  He has told me before that an Ostomy may be my only alternative.  He hasn't explained but I think the benefit is not having to endure the pain of chronic diarrhea because I will just empty into a bag.  Such an awful problem!  My husband is getting so "freaked out" about me having an Ostomy!  I think he is just so afraid that yet another surgery, just isn't going to help me; maybe even make my life more difficult!  I don't know.  I think it may help me.  Right now I take about 6-8 Lomotils some days and 2-3 Vicodins just to be able to leave my house for 2 hours (they both stop the diarrhea for awhile).  These meds are making me feel sick though; I have been taking them almost continuously for 1 yr. and 5 months!  Help!  I am scared!

Thanks to everyone for their suggestions.  I read about all of your situations and pray that I can come up with some suggestions for you also.

Looking forward to your responses!

Gilda

Posted 9/14/2010 10:12 PM (GMT 0)

I am new on this board, usually on the Crohn's message board.  After 2 1/2 years of chronic constipation, no BM with out strong laxatives, I went to Cedars Sinai this summer for a full motility workup.  Found problems with colon motility, no sensory feeling in lower colon when rectal manometry was done, sitz markers all were in the whole colon, defacography was pretty good, so rectum is working well.

Anyway after all tests were done the doc said I have two choices: laxatives the rest of my life (well we know what this is like) or a subtotal colectomy.  How do all of you or have all of you decided what was the best choice.  My GI doc says to do what ever I want, my surgeon is ready when I am, and my PCP says no way, because he thinks I will regret it and have even more problems.

Should I seek out more opinions, or just bite the bullet and make a decision? 

This is so tough, and all of you have such good advice, and HAVE BEEN THERE!!

Any suggestions are welcome, and I thank you in advance,

Anne

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