TOTAL COLECTOMY PART 30 page 12

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esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 3/18/2010 1:59 PM (GMT -6)   
Hope I'm starting this new page correctly, everyone feel free to guide me if I'm not.

Had to respond to LIZZIE, Mother hen (Rosemary) is back and ready to start mothering again. LORD GIRL, WILL THIS NEVER STOP FOR YOU! Set your alarm clock and keep on the internal pouch emptying schedule. THat was my fear of anything internal, it has to be gotten TO. External, the bag would have simply exploded and a mess to clean up but external, clean up mess, put on new bag, and one is back in business.

Because you have had such successful results so far with the internal pouch, you have excellent potential. BUT do set your alarm. We all learn by doing. Good thing the local hosp colorectal doc could get the tube in. YOU HAVE GOOOOOOT TO WRITE A BOOK when you recover. We all need to go on 20/20, Prime Time Live, etc.

Re: the rhumatoid symptoms....I sure hope they can resolve this and this is not some separate issue setting in. SOunds likely it is side effect of all the upset with your system. THere has got to be some blood component out of whack.

I'm exhausted from trip (though worth it) and have not caught up on posts. I think I posted I got severe dehydration at our last port (St. Thomas) and had to have 2 bags of saline IV to bring me around. THe ship doc was great; totally familiar with ileostomates being dehydration prone (due to not having absorption capacities of the colon.) So I actually got more prompt treatment than I would have around here. Luckily for me I live in a cold climate.

My prayers are with you and mother hen is now watching over you (hope it helps).

Sincerely, Rosemary

lasbutterfly
Regular Member


Date Joined Nov 2007
Total Posts : 281
   Posted 3/18/2010 6:08 PM (GMT -6)   
As most of you know, I'm having a re-operation for my ileostomy in July and hopefully get rid of my velcroed leg bag. I am nervous, but received a letter in the mail from my colorectal surgeon today, and I am so very scared that I can't get any of my intrusive thoughts out of my mind. I was in the hospital for 52 days last year and this is almost too much to bear.

Part of my letter said " As you know, when we met on March 8, 2010, I reviewed with you the results of the recently performed CAT skans and water-soluble contrast studies. We discussed in great detail all of the various risks, benefits, alternatives, possible complications. You understood these issues and requested to proceed on July 14, 2010, with an exploratory laproscopy, extensive lysis of adhesions, takedown of enterocutaneous fistula, hopefully construction of an end-Brooke ileostomy, and any other resections as necessary."

It further reads "We discussed in great detail with you and your family all of the various risks, benefits, alternatives, and possible complications, including but not limited to severe infection, loss of all of your small intestine with requirement of permanent intravenous nutrition, and death. I have asked that you have at least 4 units of blood available for the time of surgery. You understand the gravity and serious nature of this surgery, along with the significant potentioal for complications, risks, and death, and you have requested to proceed with the surgery."

I have been crying since I opened and read my letter this afternoon. Hearing this news was bad, but to open this letter and actually read it, was awful. I am a mess, but don't have any choice. That is why I feel so cheated.

butterfly

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 3/18/2010 6:46 PM (GMT -6)   
OK BUTTERFLY,

Mother Hen is back and she is speaking to you VERY seriously. YES YOU DO HAVE A CHOICE!!!!!!!!!!!!

This is NOT normal pre-surgical conversation. The fact that this surgeon put all of this in writing to you is to get himself off the hook legally IF you do lose all of your small intestine and worse yet if you die as the result of this surgery. He is aligning his legal ammunition with all that "You knew this but wanted to proceed anyway" crap.

I was severely injured and the doc who saved my life by doing the end ileostomy and take down of adhesions knew the severity of my damages, but in NO WAY did he tell me all this nor did he put anything in writing like you have.

SEEK ANOTHER OPINION!!!! ALSO, I DO NOT IN ANY WAY MEAN TO SOUND CRASS, BUT IS THERE ANY POSSIBLE WAY YOU COULD LIVE WITH WHAT YOU CURRENTLY HAVE? ALSO, where do you live? Is there anyway you could get to Lahey Clinic in Burlington, MA. One of their specialties is "Complex reoperative colorectal surgery." (Read between the lines on that one. It means either repairs that can be done the best humanly possible OR simply difficult cases.)

This guy you have sounds like he just put a death sentence on paper for you. I would NOT have confidence in this man at all. I can see why you are crying. We all would.

Sincerely, Rosemary

HopingForAnEnd
Regular Member


Date Joined Feb 2010
Total Posts : 42
   Posted 3/18/2010 8:03 PM (GMT -6)   
Sorry I have not been on here. Just nothing to report or anything going on. I have been waiting 3 weeks for the surgeon to call me back to see when my defecography is. I am making an appointment to see him next week now since I have heard nothing and he won't call me back.

Butterfly...most of the reason for my posting is because of that letter you typed out. NEVER and I mean NEVER have I ever heard of a doctor write a letter like that to a patient. I have worked in hospitals, my husband is a nurse and my best friend is a surgeon and he was flabbergasted by what you wrote. It IS ultimately your decision but I, myself, would be extremely leary of a doctor that wrote that type of letter. Doctors don't even do that to patients when they are attempting to extract a major blood clot from someones brain! Yes it is a risky surgery BUT death can absolutely happen from the simplest of procedures. 2 years ago my neighbor passed away from having his knee scoped. It does happen. However, to get a letter like that, I TOTALLY agree with Rosemary in the fact that he is definately afraid of some type of legal consequence from your surgery and it really makes me nervous to think of you having a surgeon that is already betting on the fact that something IS going to happen to you. Please seek out another opinion if possible. This is your life here and we just want you to be healthy.

Lizzie....when I went back reading your posts, your condition sounds just like my BIL. He was just diagnosed with RA. He was feeling the same way you are right now. However, after some steriods, he is feeling fantastic and is in remission so to speak. I really hope you get in soon to get this taken care of. I saw first hand how painful it is and I am praying for you and wishing you all the best.

Hope everyone else is well.

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 3/18/2010 8:16 PM (GMT -6)   
Lizzzie,

If it is RA like Hopingforandend says, my hair dresser has it and she is about your age. She gets some type of infusion every 6 weeks and it totally takes her symptoms away. I will ask her what she gets and post to you. If this is RA coincidentally setting in same time as all your other stuff, you got one of the worse deals going. BUT there is this hope and setting your clock for your other-wise working internal pouch should solve that issue. You need your hands painfree to do the pouch cathing so here's hoping the RA thing gets cleared up. Praying for you. Rosemary

Scrappyjrt
Regular Member


Date Joined Jul 2006
Total Posts : 212
   Posted 3/19/2010 8:44 AM (GMT -6)   
Had a total proctocolectomy last Feb due to UC. Since then I have been DXed with RA,Rheum Dr wants me to go on Remicade. Been on MTX for 10 weeks now with no real improvment. All the research I have done on Remicade makes me afraid to go on it.

www.IBDLiving.org

             


lasbutterfly
Regular Member


Date Joined Nov 2007
Total Posts : 281
   Posted 3/19/2010 8:53 AM (GMT -6)   
Thank you all for your responses, but I don't think that a second opinion will do me any good. My surgeon is from Cleveland Clinic and has put me through countless tests. He is supposed to be one of the best in the world, and spent week before last in a colorectal conference in Malaysia and was the only American having a platform there. I don't think that the letter was a cover his butt letter. He really was telling me he didn't know what could happen until he got inside me.

My only other option than this surgery is to keep my velcroed leg bag and learn to deal with it. I've had it for 9 months now. It is burdensome and a bad quality of life, because it has to be flushed at least once daily and I can't do it by myself. My husband travels alot for work and so if he is gone, I'm cramping and unable to get the obstructions in my tube out by myself. It takes him to use the syringe and squirt water or coke in my tube, and to pull it out, while I hold the container so that liquid stool goes into it after it comes out of my tube.

This is all very scary, but I really feel that there aren't any other options.

butterfly

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 3/19/2010 9:46 AM (GMT -6)   
WOW BUTTERFLY,

I see your issue, but DO remember that just because a doc works at a big name hospital does not mean he is the best of the best. I went to many top hospitals and saw many TOP DOCS in my quest to get my life saved. I mean I hit ALL the big hospitals. Many docs were clueless as to how to fix the best that could be done, many simply did not want to get involved. This letter you got WAS a C.Y.A letter if I've ever heard of one. THis is very abnormal communication this doctor has given you. Likely his medmal insurer advised him to write it to you.

It sounds like you would certainly qualify for some Visiting Nurse Assistance to help you flush your tube while you have some time to regroup if you choose to do so. I do not know your doc from Adam, but I am getting sincerely bad vibes from his letter. At the same time, I do respect your quality of life issues, but at this point you do have life to have a certain quality of, if you know what I mean.

In my search I contacted docs I didn't even see via email, described my situation, and did receive responses. SOme were willing to see me if I chose, others said I was too damaged and flat out admitted that They did not want to take the chance on dealing with my damages. At least they were upfront and honest.

But I did get a lot done via email which saved me even more running around. Most docs will respond if you keep your case worded shortly and to the point.

I wish you all the best of luck in the world and you have all my empathies and all my prayers.

Sincerely, Rosemary

marriedtoatech
New Member


Date Joined Mar 2010
Total Posts : 3
   Posted 3/19/2010 12:41 PM (GMT -6)   
turn butterfly,
 
      i also go to the cleveland clinic. my doc is Dr Remzi. i really trust him and hopefully i will have a better quality of life after my reversal than i do with my Bag. i have had it 5 years now and ready to get it off. Good luck to you and i am sure things will be ok. The docs out in Cleveland are fantastic

marriedtoatech
New Member


Date Joined Mar 2010
Total Posts : 3
   Posted 3/19/2010 12:46 PM (GMT -6)   
who was your doctor out there? i would be freaking out also if i got a letter from him like that and i would not be going to him for anything. He did me really well but each situation is different. i would be scared also. please let me know what happens.

Janiepain
Veteran Member


Date Joined Jan 2007
Total Posts : 662
   Posted 3/19/2010 4:11 PM (GMT -6)   
Lori,

My goodness, I'm so sorry you received a letter like that. I honestly have never heard of anything like that. I have to agree with Rosemary that you might want to at least try to check out some other doctors. I know CC is supposed to be one of the best, but if your doctor is going into the surgery with that attitude, I'd be worried. Please at least try another surgeon; I would send Rosemary's doctor an email and see what he thinks. I know you want to have this surgery and get it behind you, but you're talking about your life. Also, I think I'd call CC and ask about the letter and ask if that's standard procedure for complicated surgeries. I've never heard of such a thing!

Lizzie,
How are you feeling? You and Lori together could certainly write a book. Please let us now how you're doing!

I've had a stomach virus since Wed. night. I started out throwing up (I NEVER get a stomach virus) and thought it might be what I had for dinner, but yesterday I was in bed with fever, achy body and just exhausted. I had just a little diarrhea , but of course most everything came up before it could go through me! Today I stayed in bed until noon, and now hubby is in bed starting with diarrhea and feeling yucky. My son and his family had this 3 weeks ago; I hope it misses everyone here; it's pretty awful.

Hello to everyone else, hope you're doing well.

Janie

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 3/19/2010 5:03 PM (GMT -6)   
Butterfly,

Call Lahey Clinic main line and register. It does not obligate you to anything they just get you on the system. Main line is 1-718-744-8990

After you register, have them connect you to the Colorectal Department in 6 West. Burlington, MA.

John Coller, MD was my ileo surgeon. He has had to give up lengthy surgeries due to his back. He is an older man and extremely knowledgable and very good with people. He even returns his own phone calls to patients personally. But he would be a good person to talk to to give a brief account of your issue. I think Peter Marcello, MD, the younger associate now does the complex reoperations or maybe jason hall, MD. I was there so long I got to know them all. They would actually speak with you if you sent your records and I think they review free of charge. They would never write you some pessimistic death sentence letter. If they could not handle it they would simply say so and why. You do not have to put up with the crap you are getting from CC. Give Lahey a call. You have nothing to lose. Don't gamble your life to that hung up legal pessimist. You deserve better.
Rosemary

Janiepain
Veteran Member


Date Joined Jan 2007
Total Posts : 662
   Posted 3/20/2010 12:07 PM (GMT -6)   
hi everyone

I just started a thread saying I'd had the stomach virus Wed and I'm still having diarrhea, even though I'm only drinking gatorade and small amount of soup yesterday. This is really hit me hard; I never get stomach flu and now without colon not sure what to do. I've spent most of the last 3 days in bed; everyone else in family has had this and was up and around after 36 hours. Any suggestions on what I should try to eat, drink? I have absolutely no appetite and am just so tired and weak.
Thanks,
Janie

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 3/20/2010 1:33 PM (GMT -6)   
Janie,

Get to an ER stat. You are dehydrated. Have them check BUN and Creatnin levels. If they are low, you need at least two liters of saline IV and you will feel better. Don't wait. Stomach flu and diarrhea without colon and dehydration can lead to kidney failure. Go now. The exhaustion and lack of appetite are signs of dehydration. Rosemary

Didn't they warn you of this when you had your colon out?

Without colons we are always partially dehydrated. Sick and diarrhea on top of that and you need an IV.

Janiepain
Veteran Member


Date Joined Jan 2007
Total Posts : 662
   Posted 3/20/2010 6:36 PM (GMT -6)   
Thanks Rosemary. Am in er now

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 3/20/2010 6:59 PM (GMT -6)   
Janie,

GOOD GIRL. A few bags of IV saline and you will be a new person. Have them check your electrolytes, metabolic profile, cbc, and whatever else may have been thown off during your illness. Kidney function blood tests are a must: BUN and Creatinine.

On my crusie around S. America I passed out cold from dehydration in a hot port though I'd drunk over a half gallon of water. As though we don't have enough to deal with, this dehydration thing can also kill us. My ileo surgeon and ostomy nurse said if I ever get the stomach flu to just get right to the ER at the time and have them give me IV's until it passes. As I remember it you have no colon, but have no bag? Small hooked to the rectum? (Have been away so long I forgot who has what), but without colon we loose most of our ability to absorb water and electrolyes. The ship doc was great; did the blood work and brought me around with 2 liters of IV saline. I felt super after and was peeing up a storm.

Glad I could help, Good Luck, Rosemary

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 3/21/2010 11:59 AM (GMT -6)   
Rosemary, so glad to see you are back and posting again.

Janie, what happened at the ER? Hopefully you are feeling better now. There was even a time in my life, with my colon, that I had salmonella poisoning I was throwing up and could not drink anything and I had to go to the ER for IV fluids. I was sick for 5 days before I went to the ER. My urine was so full of ketones that the doctor was like "when did you last drink fluid?" He said it was to a dangerous level. My blood work showed severe dehydration. I got 4 bags of fluids and antinausea meds over the night. But it still took me a week to get my strength back. That was awful.

Lizzie, how are you doing?

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 3/21/2010 12:21 PM (GMT -6)   
Hey Tracy,

Am spending all weekend on answering interrogatories for my case. It is like writing a doctoral dissertation. Why should the victim have to do all this work. Yeah, it feels good to be back Mother Henning all of you young chicks. I worry for Lizzie, Eeee Gads, I won't even ask what next for her. Just prayers for her and I will check with my hair dresser about her infusions for Rhumatoid Arthritis. THere is relief for that. Talk to you when I get my head above water. Rosemary

Janiepain
Veteran Member


Date Joined Jan 2007
Total Posts : 662
   Posted 3/21/2010 1:59 PM (GMT -6)   
Rosemary,
I'm fine. Blood work was ok, but I was given IV fluids. The doctor said it was good to be careful and that I did the right thing by coming in. I still don't feel great today, but better. Am watching my grandbaby this afternoon and am exhausted!! But having fun. Will post more soon, but thanks so much for your help Rosemary.
So glad you're home!

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 3/21/2010 2:08 PM (GMT -6)   
Thanks Janie. Glad I could be of help. Feel better. Rosemary P.S. Had a great time, but good to be home.

lasbutterfly
Regular Member


Date Joined Nov 2007
Total Posts : 281
   Posted 3/21/2010 3:04 PM (GMT -6)   
Hi everybody. I'm reading thru the posts and feel like you're all just like family.

I have had a difficult weekend. My tube keeps obstructing and I'm cranky. I'm not sleeping, because that darn letter keeps flashing back at me. I'm usually positive, but this is honestly the hardest thing that I've ever encountered.

I have bipolar disorder and part of it is that I obsess on things. I have a counselor that has helped me deal with problem areas for me before every surgery that I've had. I suffered PTSD from my last surgery, and now this. I am terrified and having trouble sleeping nights.
My mind just won't turn off.

I stayed home from work on Friday and just had a mental health day. It was a time for me to think about me and whether or not I should go ahead with this surgery. I've decided to go forward with it in July and pray for the best. I have to try to stay healthy until then.

I am going to make an appointment tomorrow to see my counselor sometime this week. I've slept almost all day the past 2 days and am afraid of this turning into a depression for me.

butterfly

honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 3/21/2010 3:25 PM (GMT -6)   
 Rosemary, correct me if I am wrong but did you have a total colectomy?  I had mine on Feb 19, I feel pretty darn good.  Had some issues with nausea but that has resloved itself by not taking the perks, so I am taking Vicodin instead and that works better.
so if your the one then I have some questions I would like to ask you if you dont mind.
 
Leslie
Leslie King
 
 
1993 Gallbladder Removed
1997 Hysterectomy
1998 Carpol Tunnel Right Hand
1999 Spinal Cord Surgery for a Anacroid Syst
2001 Lower Lumbar Fusion L4-5
2003 Sigmoid Colon Resection
2005 Breast Reduction
2006 Right Knee Replacement
2008 RE-did the Lower Lumbar Fusion/ lamanoctomy
2010 Total Colectomy diagnosed with CI
 
 
 


esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 3/21/2010 4:31 PM (GMT -6)   
Hi Leslie from Rosemary,

Sorry I'm not the one who had the total colectomy. I still own my colon but it can never be used again due to damage from what turned out to be the unneeded sigmoid resection for what was misdiagnosed as a sigmoidocele (internal prolapse of sigmoid). Crooked surgeons saw it was not an issue and removed it anyway among doing other internal prolapse corrections on prolapses I did not have nor consent to having fixed. Procedures for dollars. In litigation now for this.

HOWEVER, I had to have a permanent ileostomy (poop out of small intestine into external bag), so I do qualify as being without USE of colon. So fire away, if you have questions I can answer. I have first hand experience at dehydration, electrolyte imbalance and all that can happen systemically without the use of the colon.

Sincerely, Rosemary a.k.a. Mother Hen

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 3/21/2010 4:38 PM (GMT -6)   
Butterfly,

Is Steve Wexner your soon-to-be surgeon for your surgery?

Is there any way you could just have a conversation with him on the phone?

He was actually one of the docs I sent my scan to to see if he could tell me what he saw. I got a very nice letter back from him saying he was flattered I sought his opinion but was sorry he could not open that type of software on his computer and wished me well. His tone was certainly very nice.

My thought is if you could tell him the impact his letter had on you and just the short form of how you are feeling, maybe somewhere in there he may just reassure you that he wouldn't be doing this surgery if he thought you were really going down all the roads he mapped out in the letter. He may have been just having a rough day when he wrote it. Also the business part of the hospital may have actually made him write it. There are all these risk teams with medmal insurance that have impacts on docs that really have nothing to do with the doctor-patient relationship. So much of this may be a dollars and cents, insurance issue that has nothing to do with you.

Good that you are seeing your concilor, but sometimes speaking direct with the person involved is best. I really feel for you and know for sure that I would be haunted by that letter too.

Rosemary

lasbutterfly
Regular Member


Date Joined Nov 2007
Total Posts : 281
   Posted 3/21/2010 4:56 PM (GMT -6)   
Rosemary, yes, Dr. Wexner is my surgeon. He is very nice and the very best in his field. When I saw him on March 8, he basically told me the same as was in my letter, but it's much harder to read it in print than to hear. My husband keeps telling me that I am in the very best of hands and everything will be fine. It's still very hard to swallow.

I feel for you, too. Everything you're having to go thru, because of someones negligence. I've lebutterflyarned from all of this that medical research definitely needs to spend more in funding for colorectal issues. Once our plumbing starts not working, we really don't have many options. I know that I shouldn't think this way, but sometimes I think that a person with heart issues has more going for them than we do.

PS-You make me smile with your mother hen!
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