TOTAL COLECTOMY PART 30 page 12

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

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.

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.

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

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.

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

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.

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

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

Thanks Janie. Glad I could be of help. Feel better. Rosemary P.S. Had a great time, but good to be home.

 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

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