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TOTAL COLECTOMY PART 29

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Posted 12/27/2009 1:53 PM (GMT 0)
Marisa and Hodaya all this talk of Froot Loops is making me crave them.  I used to eat them all the time prior to my problems which started 9 years ago.  I was like a kid with my cereal prior to issues.  I had to stop eating cereal because it would blow me up something terrible.  I could eat it and within an hour was so blowed up and sick I couldn't stand it.  I have tried cereal twice since surgery and did well.....might be time to try some Froot Loops again!tongue

Do suppositories work for you guys with the outlet issue?  I am able to go to the bathroom several times a day and usually go at least once or twice during the night by using a suppository.  I don't even put it all the way in I just hold it there until I get the urge then I'm able to go. (I know that sounds gross but it works) If I don't use the suppository I will eventually go but will only go about once a day, and I will still feel like I need to go.  I do use Miralax occassionaly when I am feeling really full and just not getting enough out even with suppositories but that is not often.  I can live like this as long as it doesn't get worse.  I may be doing damage but what else is there to do.

Well I need to try to get some things done.  I bought a new Dyson Animal vacuum cleaner last night to make my life easier.  It is light and so easy to use.  Sweeping all these hardwood floors was killing me so I bit the bullet to make my life easier!smilewinkgrin

Lizzie how are you doing?  Praying for you all.

Jen

Posted 12/27/2009 2:08 PM (GMT 0)
Janie,

Keep up with those Coolata's, anything that works! I think the reason alcohol does not work for you is that the rectum is still part of the colon whereas I'm dealing solely with my small intestine. Oh, well, whatever works.

Jen,

Could it be that you are just breaking a rectal spasm by just holding the suppository in there? For all anyone knows I may only have had rectal spasms too.
Again, whatever works.
Rosemary
Posted 12/27/2009 4:28 PM (GMT 0)
Rosemary I don't know about the rectal spasms....maybe. Before my surgery suppositories only worked after I had taken 20 stimulant laxatives and about 18-24 hours had passed. So hopefully the small intestine will keep working and move things down to the rectum so I can go with the help of a suppository.

Like you said whatever works we have to do.

Jen
Posted 12/27/2009 4:58 PM (GMT 0)
Janie, such a little part of colon is left and SO much trouble it causes. but then again, if it's the pubo's fault, then even taking out that little part (rectum) won't solve our issues. it's hard to maneuver as the gutt is such a tricky organ, at least our gutts are, they are not stable.. so one thing can work one time and then a second time it doesn't and almost any food constipates us, we can't live only on liquids!!! can't blame you for being so confused trying to figure it out!!! has the thought of having a bag crossed your mind? are you scared of having one? i'm thinking, as long as i find things that work well enough, i'm keeping it that way, but only if i reach to a point i can't go at all and nothing helps anymore, then i will consider a bag. like Rosemary, i say we stick with whatever works for us for now! Jen, the thing with suppositories is that prior to surgery my mom used to always tell me for yrs "why don't you use suppositories??" and i always refused, cause i was SCARED to penetrate the anus. anyways one day i broke and agreed to try after 5 days of not going to the b/r. i put it in and waited for an hour. nothing happened. so the next day i put 2 and waited an hour again and nothing, then the next day i put 2 and waited 4 hours and of course still nothing, so i said that's it! i'm taking 2 before i go to sleep, i went to sleep with them in me, woke up in the morning and there was NOTHING!! later, after learning a bit about my problem and with the help of my tests results i learned that it all didn't help me cause the stools doesn't reach the rectum at all for me, so that's why nothin comes out with a suppository. maybe now it can help, i don't know, but i'm managing with prune juice now, so it's o.k for now. any kind of cereal blows me up bad too. i can't eat it at all. but good luck to you with those fruit loops ;) are they made of rice/corn/anything else? just got back from work and am so tired.. hope you all have a blessed day!
Posted 12/27/2009 5:01 PM (GMT 0)
Jen,

WOW! your issues prior to surgery were very serious. Glad it's easier for you now. Rosemary
Posted 12/27/2009 6:51 PM (GMT 0)
TDR, yes, I had a rectal outlet problem, but my small intestine was tested and it was good for me to go on and get my ileostomy.

butterfly

Posted 12/27/2009 8:55 PM (GMT 0)

Hey all...

I just tried to get caught up on everyone and their holidays. Mine were ok...so nice to see family...but I have been so sick. I did ok on Christmas even because I barely ate anything but Christmas day I caved and tried to eat a small portion of lasagna and I ended up vomiting and distended. I ended up throwing up over 7 times throughout the night. we went out of town again yesterday and all I had all day was a few saltines and some sherbert so besides feeling weak I dis not throw up. I am still having horrible right lower abdominal pain and the extra strength percocet works, but again it slows my gut even more. I have not gone is a day and a half again and have to take laxatives, but just feel so tired and weak from everything. My family is very concerned and they said my eyes just look so empty...they tried to put me on the scale, but I refused. I think I am still maintaining, but my mom think I am under 100 now. I have not been in the sizes I am now since I was a sophomore in highschool. I see my surgeon here on Wednesday and I am still planning to eat before I go to show him what happens.

Hodaya and Tracy- The three main tests I had to be diagnosed with anismus (which has many other names) is the anal manometry, defecography, and honestly you can see it and feel it with simple biofeedback. Both of you, like me, would benefit from an ileo and like we all know it is not the end of the world. There are so many pros for you two that would give you back your lives. Three doctors have diagnosed my anismus just with a rectal exam. On exam I have claming down and spasms with the consticting of the examiners finger. I hope you can both get some answers and I pray that you can make some decisions that will give you back your life...you both deserve it so much and I pray for you daily.

Jen- How has your eating been sweetie??? Have you maintained or are you still losing and have you thought about talking with your doctors again about TPN?? Thinking of you and praying for you always.

Judy- Good luck this week with the surgery...praying for you always. So happy you had a wonderful Christmas. I hope you can get some relief with this surgery and have the spasms eased. You are so strong.

Janie- So glad you are still doing well with the Miralax. I am so happy this continues to give you relief and that you no longer suffer as you did with all the rectal pressure. Happy to hear you had a good holiday. Thinking and praying for you to contninue to do well. xoxox

Rosemary- Thanks for the info on the supplement. I believe thats what they gave me in the hospital after my TC, but I will see and if I can tolerate it. Praying for you always and hoping your fight to show the wrongful work of those horrible doctors brings you the win we are all pulling for. You are a blessing to this site and you help so many each day with all your knowledge and compassion.

Jenise- You are doing so wonderful and I am so happy for you!!!! Hope the twice a day Miralax will work for you. Keep resting, eating well, and pooping. I am so incredibly happy for your progress!!!

Marisa- Good to hear form you honey and glad your holiday went so well!!! I think it is so funny your craving for fruit loops. I have not had them in so many years! I used to love them as a kid :) Thinking of you always.

Lori- How you doing honey???? Thinking of you always. xoxo

I am not feeling to well so I am going to have to cut out...just tried to eat a little and its not settling well. I love you all...

Lizzie

Posted 12/27/2009 10:55 PM (GMT 0)
Lizzie,

Glad you posted. Eat up a storm, puke your guts out right in front of that doctor Wednesday and tell him very matter-of-factly that you are dying. Then just say, can you please help me. Your case is identical to mine. Let me know how it goes. I have an in at Lahey with the patient advocate and the philanthropy office. If you get no where, I will make some calls for you. If all stays well with me, I leave on Jan. 7th so will do what I can for you before then.

Do weigh yourself and report your weight loss to this doc. One thing that got me help was I looked like a POW and had lost 1/4 of my body weight. Severe weight loss due to being UNABLE to eat does pull some weight in the medical world. At leas something still does.

Rosemary
Posted 12/28/2009 1:11 AM (GMT 0)
Lizzie, I am doing well. Having surgery hopefully in June is always on my mind. I've gained weight lately, as I cannot exercise and it worries me, too. If I try to get on the treadmill, my tube pulls apart and I end up with poo inside of my pants. My diet is terrible, because most things that are good for me, I cannot have because they don't digest properly and get stuck in my tube.

You are always in my thoughts and prayers and I hope that you'll feel better soon. I know that you had a difficult time with your ileostomy, too, but maybe another one would help you regain some normalcy to your life. That's what I'm hoping.

butterfly
---------------------------------------------------
Chronic Constipation 11/06-7/07
Diagnosed Colonic Inertia May 2007
Total Colectomy with ileorectal anastamosis 8/07
Constipation again 3/09
Ileostomy with obstruction 5/09
Emergency surgery 6/09 ended with 3 fistulas , a feeding tube, 3 jp drains, and a leg bag with tube attahed to small intestine (52 hospital days)
Drains removed 7/09 and 9/09
Possible surgery for Brooke ileostomy 6/10
Posted 12/28/2009 1:25 AM (GMT 0)
Lizzie,

If your issue is adhesions I just found an incredible amount of info on google by Dr. Steve Wexner at Clevelenad CLinic Florida. He really knows how to get rid of adhesions like my doc at lahey did. Then if you need the ileostomy so be it. Stomas well made are much easier to get a good bag seal on. Hope you get to a point where you can eat, gain nutrients, and pass waste however that has to be done. Those were my requirements when I finally met my doc at Lahey. I just flat out said is there anything that can be done so I can have those 3 life-sustaining elements. Nobody could argue with that. Rosemary
Posted 12/28/2009 1:41 AM (GMT 0)
Rosemary and Lizzie, I cannot say enough good things about Dr. Wexner.  He is wonderful and one of the leading colorectal surgeons in his field.  He performed my total colectomy and is going to perform the re-route of my ileostomy.  I am afraid, but know that I am in very competant and knowledgable hands.  Also, he usually has 5-6 MDs doing fellowships that are following him around.

butterfly
---------------------------------------------------
Chronic Constipation 11/06-7/07
Diagnosed Colonic Inertia May 2007
Total Colectomy with ileorectal anastamosis 8/07
Constipation again 3/09
Ileostomy with obstruction 5/09
Emergency surgery 6/09 ended with 3 fistulas , a feeding tube, 3 jp drains, and a leg bag with tube attahed to small intestine (52 hospital days)
Drains removed 7/09 and 9/09
Possible surgery for Brooke ileostomy 6/10

Posted 12/28/2009 2:51 AM (GMT 0)
Butterfly,
Good to hear that about Dr. Wexner. WISH I'd seen him for my ORIGINAL 2006 issue, however, we gotta get Lizzie some help. She cannot sustain like this. Reminds me of me going around trying to get help after my colon, rectum, and small intestines had been scarred shut by my 2006 surgeons from what turned out to be the unneeded sigmoid resection and a bunch of other stuff they did. No doc seemed to get the idea that one needs to eat, get nutrients, and expel waste however it needs to be done. After 13 months I began to wonder if docs didn't get it, but in my case, due to it being an iatrogenic injury caused by unneeded surgery, other docs were simply going to stay out of it and let me die as they wanted no part of any litigation. But with Lizzie, it is that something simply went wrong, nothing done wrong. So I don't see why she is not getting any help. This is an all out team effort here. Between the half dozen of us or so we will get her saved. This is now a crusade. During my 13 months of being unable to eat I read articles about starvation wondering how long I'd last. and they all said 2-3 months was the limit. I have no clue how I made it 13 months. But it was excruciating. The mind starts to go after a few months. I still have not totally recovered from the dizziness and it's been 2+ years that I've been able to eat since my lysis and ileo surgery in aug. 2007. But if a bit of vertigo is all that remains from my ordeal I'll be glad. I lost bone density in my spine though that when I'm older could turn into an issue. Lizzie is WAY too young to be going through all this. Rosemary
Posted 12/28/2009 4:32 AM (GMT 0)

Rosemary....

Thanks for all your kind words. I was able to keep some food down tonight. Been in a lot of pain and had to take three percocet, but only puked once and it was literally all the sprite I had drank :( but the food seemed to stay down. I will eat away before Wednesday and I took pictures. I made it like this last time for 13 months too....we must have strong bodies, but I know something has to be down or something will give eventually. I hope these next couple weeks get me some answers and I can just move on and do what I have to do to get better. I truly thank you from the bottom of my heart for all your concern...I am ok, but do need answers and someone willing to take the next step. I have hear Wexner is amazing.....and I am so happy our little Lori is in his hands. You are truly the sweetest ever and thanks for all your prayers.

I do not know why, but I picked up my day off this week at work....I cannot say no...but I was suprised they asked me of all people. I hope the week goes by fast and I can just find the energy to get through the days ahead. I will keep you all posted about how Wed goes...

Love to you all.

Lizzie

Posted 12/28/2009 6:19 AM (GMT 0)
Just wondered if anyone else ever experienced the fear and panic i have had lately. I have been having nocturnal panic attacks since this has all gotten so bad. I feel scared inside and never have felt so vulnerable. I made my husband promise nothing bad will happen to me.....so scared tonight. Wish I lived by one of you all.....

Posted 12/28/2009 12:48 PM (GMT 0)
Lizzie, your panic attacks are normal.  It's just your body telling you that you've been thru too much.  I was afraid of everything in the hospital and my legs wouldn't quit trembling.  My husband had to hold them down at times.  I am mostly afraid of any procedure.  My counselor is working with me on imagery, and trying to help my redirect my thoughts when I am so afraid.

butterfly

-------------------------------------------------------------

Chronic Constipation 11/06-7/07
Diagnosed Colonic Inertia 5/07
Total Colectomy with ileorectal anastamosis 8/07
Constipation again 3/09
Ileostomy with obstruction 5/09
Emergency surgery 6/09 ended with 3 fistulas , a feeding tube, 3 jp drains, and a leg bag with tube attahed to small intestine (52 hospital days)
Drains removed 7/09 and 9/09
Possible surgery for Brooke ileostomy 6/10

Posted 12/28/2009 12:53 PM (GMT 0)
Lizzie, if you want to speak with Dr. Wexner, his phone number at Cleveland Clinic is: (954) 659-5251.  He will usually call back within a couple of days.  If anyone can help us, he can.  I know that your insurance is a problem, but if you could just see him, I believe he could help.  Dr. Wexner also does surgery on prior surgeries (from prior surgeons), in hopes to fix patients from surgeries that didn't turn out well.

 

These are a list of his accomplishments.  They are amazing:

Biographical Sketch

Steven D. Wexner, MD, is Chief Academic Officer at Cleveland Clinic Florida. Dr. Wexner served as Chief of Staff at Cleveland Clinic Hospital from 1997 to 2007. He is also Chairman of the Department of Colorectal Surgery, Chairman of the Division of Research and Education, and 21st Century Oncology Chair in Colorectal Surgery at Cleveland Clinic Florida. 

Dr. Wexner holds academic appointments as Professor of Surgery at Cleveland Clinic Foundation Health Sciences Center of The Ohio State University; Clinical Professor of Surgery at the University of South Florida, Tampa, Fla.; Clinical Professor of Biomedical Science at Charles E. Schmidt College of Medicine, Florida Atlantic University; Professor of Surgery, University of Siena, Siena, Italy; and Visiting Professor, Faculty of Medicine, Hebrew University of Jerusalem, Hadassah Medical Organization, Jerusalem, Israel. 

In 1999, he was awarded an FRCS from the Royal College of Surgeons in Edinburgh, and in 2000 he was awarded an FRCS from the Royal College of Surgeons in England. In 2003, the American Jewish Committee presented Dr. Wexner with the prestigious Maimonides Award. Dr. Wexner is the Past President of the Society of American Gastrointestinal and Endoscopic Surgeons.  He was awarded and FRCS by the unanimous election of council of the Royal College of Surgeons in and also honorary membership in the Association of Coloproctology of Great Britain and Ireland in 2008.

Dr. Wexner has published over 470 manuscripts, more than 190 textbook chapters and more than 85 editorial and invited commentaries. He is the editor or co-editor of 25 textbooks or freestanding volumes to date and is a member of 19 editorial boards and a reviewer for an additional 30 journals. He is an active member of 43 learned societies and has held more than 26 appointed or elected offices in these societies. He is an honorary member of the surgical societies of seven other countries and has held over 40 visiting professorships and delivered over 1,052 scientific lectures. 

Dr. Wexner has received 16 national, international and regional awards for his research and is the Symposium Director of the Annual International Colorectal Disease Symposium held in Fort Lauderdale, Fla. This course is the largest annual international colorectal course in the United States. In addition, Dr. Wexner trains 15 to 20 surgeons per year in laparoscopic colorectal surgery, surgical oncology and the surgical management of inflammatory bowel disease. In that capacity, he has been the host educator to thousands of surgeons from around the world.  

Dr. Wexner has been elected by his peers as one of the best colorectal surgeons for inclusion in "The Best Doctors in America" (Woodard and White, 1995 to 2003), "The Best Doctors in America" (American Health, 1996), "Best Doctors in America (2005-06, 2007-08)," "Top Cancer Doctors," Good Housekeeping magazine (1999), "How to Find the Best Doctors? (2000), "Best Doctors in South Florida," Miami Metro magazine (2000 and 2001), "America's Top Doctors" (Castle Connolly, 2002 through 2006), "Guide to America's Top Surgeons," Consumers' Research Council of America (2002/2003/2006/2007), "America's Top Doctors for Cancer," Castle Connolly Medical Ltd. (2005-06, 2007-08) and "Executive Health: Top Docs," South Florida CEO Business magazine (2002),  Strathmore's Who's Who (2006-2007), "The Top Docs: 152 Physicians in 30 Specialties in South Florida," Boca Life magazine (Jun. 2007), and "2008 Florida Super Doctors-South Florida Edition."

Professional Highlights

  • President, Society of American Gastrointestinal Endoscopic Surgeons (SAGES)2006-2007
  • President, Florida Gastroenterologic Society (FGS) 2004-2005
  • President, South Florida Chapter American College of Surgeons 2000-2004
  • Secretary, American Society of Colon and Rectal Surgeons (ASCRS) 2008-2010
  • Governor, American College of Surgeons 2000-2006

Education & Fellowships

Fellowship - University of Minnesota Hospital and Clinic
Colorectal Surgery
Minneapolis, MN USA
1988
Residency - Roosevelt Hospital
Surgery
New York, NY USA
1987
Internship - Roosevelt Hospital
Surgery
New York, NY USA
1983
Medical School - Cornell University Medical College
New York, NY USA
1982
Undergraduate - Columbia University
New York, NY USA
1978

Certifications

  • Surgery
  • Colon & Rectal Surgery

Specialty Interests

Colon Cancer, Constipation, Crohn's Disease, incontinence, laparoscopic colon resection, laparoscopy, rectal cancer, Ulcerative Colitis

Awards & Honors

  • Best Doctors in America, Woodward and White, 1995-2008
  • Best Doctors in America, American Health, 1996
  • Best Doctors in South Florida, Miami Metro magazine, 2000, 2001
  • Top 318 Cancer Doctors for Women, Good Housekeeping magazine, 1999
  • America's Top Doctors, Castle Connolly, 2002-2008
  • America's Top Doctors for Cancer, Castle Connolly, 2005-2008
  • Guide to America's Top Surgeons, Consumers' Research Council of America, 2002-2007
  • Guide to America's Top Gastroenterologists, Castle Connolly, 2007
  • Executive Health: Top Docs, South Florida CEO Business, 2002
  • The Top Docs, Boca Life magazine
  • Florida Super Doctors, South Florida Edition
  • 21st Century Chair in Colorectal Surgery
Honorary Fellowships and Memberships:
  • Royal College of Surgeons, England
  • Royal College of Surgeons of Edinburgh
  • Academia Argentina de Cirugia, Argentine Surgical Academy
  • Deutsche Gesellschaft fur Chirurgie, German Surgical Society
  • Colegio Brasileiro de Cirurgioes, Brasilian College of Surgeons
  • Sydney Colorectal Surgical Society, Australia
  • Welsh Surgical Travelling Club
  • Colorectal Surgery Society of Singapore
  • Hong Kong Society of Colon and Rectal Surgery
  • International College of Surgeons, Japanese Section

Innnovations & Patents

One of the pioneers in the surgical management of rectal carcinoma (cancer) as well as laparoscopy and the surgical treatment of fecal incontinence

Memberships

  • American Society of Colon and Rectal Surgeons
  • American College of Surgeons
  • Society of American Gastrointestinal Endoscopic Surgeons
  • Association of Coloproctology of Great Britain and Ireland
  • International Society of University Colon and Rectal Surg

Posted 12/28/2009 1:50 PM (GMT 0)
Lizzie,
Wow Great info from Butterfly. Call and get Steve Wexner's fax number. Then fax him a one-page only bullet item list of your issues. Keep it short and double space it in a slightly large font so he can quickly and easily read it. End with "......due to all of this I am unable to eat, gain nutrients, or pass waste. I am only 29 and have a strong desire to live, continue my nursing career, and be there for my family, can you help me?" Put in all your contact info. Good docs like he LOVE a challenge, they don't say "It's all in your head." Plus you will have painted a picture of the total you, not just the damaged/sick you.

Your night panic attacks are from malnutrition and the fact you know you are going to die if nobody deals with this. They are your body's way of giving you the drive you need to get help to get your life saved.

My PCP who kept saying of my damages "it's all in your head" kept taking blood work and kept telling me "See all your labs are fine." I said, "yeah my body is taking calcium from my spine, and other nutrients from my muscles that were wasting rapidly." SUre enough my DEXA bone scan showed severe bone depletion of my spine. I had NO muscle on me at the time. How could she have thought she was pulling one over on me? My brain had slowed but not THAT much. Take drastic action this week. Good luck Wednesday, then contact Wexner. Try those Boost drinks. Rosemary
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