I Do Not Know How Much More I Can Take of This!!!!!! Rosemary

Gilda, In my mass mailing with visuals attached I will get his exact address and send to him my illustrated stoma diary and cd of all that is in back of the stoma. I will send it fed ex, track it, call the secretary, and tell her I am from cross country and cannot fly due to gut pressure issues in planes. So long train ride for me. But if he could help I would ride the rails!

Then if he seemed like he had some ideas I would follow thru. DO keep in mind that many places have a policy that they will NOT help patients in litigation like I am for the original gut injury that necessiated the ostomy as they do not want to be called to testify. This is flagged as third party fault on my medicare insurance and I cannot get the flag off there. So every computer in every docs office in the country tells them right off that I am in litigation.

I sure wish my medmal atty would have told me that or I would not have bothered suing as I would rather have my life than what few dollars - will get out of it. Plus it will not stop my defendants from keeping on doing this to other women. So my basic point to making them stop was fruitless and will likely deprive me of care I need to survive. I wonder how many patient plaintiffs know this. That is why mayo will not help. They flat out said so.

But I will write him and give it a shot! And do let me know how you do. I think if I find the right person and they have that policy then all I have to do is drop the suit and then I can be seen. I should call mayo and ask that woman at registraion. May be the way to do. At least I filed suit and ruffled their feathers and had grounds but would rather have my life!

The old saying all we ever needed to learn we learned in kindergarten, not so true!

esoR said...
Gilda, In my mass mailing with visuals attached I will get his exact address and send to him my illustrated stoma diary and cd of all that is in back of the stoma. I will send it fed ex, track it, call the secretary, and tell her I am from cross country and cannot fly due to gut pressure issues in planes. So long train ride for me. But if he could help I would ride the rails!

Then if he seemed like he had some ideas I would follow thru. DO keep in mind that many places have a policy that they will NOT help patients in litigation like I am for the original gut injury that necessiated the ostomy as they do not want to be called to testify. This is flagged as third party fault on my medicare insurance and I cannot get the flag off there. So every computer in every docs office in the country tells them right off that I am in litigation.

I sure wish my medmal atty would have told me that or I would not have bothered suing as I would rather have my life than what few dollars - will get out of it. Plus it will not stop my defendants from keeping on doing this to other women. So my basic point to making them stop was fruitless and will likely deprive me of care I need to survive. I wonder how many patient plaintiffs know this. That is why mayo will not help. They flat out said so.

But I will write him and give it a shot! And do let me know how you do. I think if I find the right person and they have that policy then all I have to do is drop the suit and then I can be seen. I should call mayo and ask that woman at registraion. May be the way to do. At least I filed suit and ruffled their feathers and had grounds but would rather have my life!

The old saying all we ever needed to learn we learned in kindergarten, not so true!

oh brother, the place that did the finger check for the stoma under supervision of the highly recommended doc all board certified in colorectal surgery, I cannot mention publicly, but I should NOT have had that checked out due to the food blockage. The two tears in my stoma so far have healed but it is NOT working so well since then. Worse today. I am scared crapLESS pun intended. Not taking in more than some protein shakes.

I think basically the weird shape of the stoma made the opening very small after the first month when it was working great all swollen. THEN the resident does the finger check with pinky but just obviously too big for my stoma otherwise it would not have torn in two places. When they saw all that blood on those gauzes one would think they would have stopped.

Sent out some letters today to some colorectal docs in other parts of the country, not naming names or anything, just here is what I have been through and stoma that was revised and worked a month then not so much on some normal food but i could have gone lighter, now hardly puts out at all due to basically being injured and scarred from a finger check. I included pics. MY GOD I would rather be printing out vacation pics!

These docs are going to be like What the Heck is this, then why would anyone split a stoma in two places, then likely put the letter aside and not deal. I did enlcose a check for their time to read it as their time is valuable, but I will likely get back sorry cannot help. I am terrified. Pray for me. Rosemary

I know just yesterday I was thnking I cannot go on trying to fight this all alone. I put out some letters to some docs across the country. I know one could help me for sure and maybe another but two of them the hospital wonkt allow their docs to help anuyone in any kind of litigation though not aimed at them. Its like well am in lit for the original gyn surgery done here that put me in the need of an ostomy but look at all that has gone wrong with these ostomies and nobody to do with that is being sued. The ostomu people are all justy trying to save my life. But I suppose they don't want their docs to have to sit about and testify when they could be working. But isnkt the patient important in any of this? I have to get that litigation done with. After sept 4 I should find out when the trial is but if I need an ostomy revision or die then I would rather just drop the suit and get the help. I mean one more suit will not stop my original defendants from practicing so I can help save others. They now are up to 13 combined claims and suits and on they practice. So I never should have gotten into thaty but was trying to get money for the uncovered ostomy supplies, reimbursement for lost wages and career and all I have been thru. But if my life is at stake yet again I would rather be free to get the best stoma. And adhesion lysis surgeon in the country. I mean anyone would choose the same. Thx I am getting so discouraged. It bothers me that neither my most recent ostomy revision doc or the doc whose resident did the stoma finger check gets why it tore. It is only 1/2 inch across and the resident went straight in. You never go straight in. There is an angle to go in at. RJ

Karen,

I WAS dealing with the hospital where I got the original stoma four years ago by the good colorectal surgeon. It was those who took his place that left me TOTALLY stenosed and told me I was bowel obsessed. I then had to find my own help. Went to the colorectal dept of mt s and got the stoma redone by a general surgeon who I was given the impression his colorectal partner was going to do the stoma part of the surgery but that did not go that way. But at least they dealt with it and maybe I should leave it that if I can at least eat gush and drink then maybe live that way????????? Prognosis???????? How long will this stoma last????????????? Would love to travel again but gotta get the energy to and have some kind of confidence. Once a stoma has been injured too like mine was with the cracks by the exam at the other hospital it can also stenose from that? I feel like I need to hire a medically trained advocate. The case on the original defendants I foind out will go out a year or more. If there was an emergency and I could not get treatment unless I dropped the suit then I of course would drop it. I originally did it in hopes of saving other women in our area from falling victim to these original pelvic organ prolapse docs as I did but even another suit will not stop them.


I am in the process of gathering opinions re current issue. Each one is different. R

Stoma is working enough but did get an appt way out of the area which may be my best bet. Some travel medicine to say the least but may be a good idea. Gathering records as we speak. RJ

Thanks for idea. Am being sure to drink a lot and eat only gushy stuff. It was either the construction of the stoma, not so good, as part of it collapsed making the opening really narrow, OR it was the injury to the stoma I think is causing subsequent narrowing as scar tissue built to repair itself.

Feel horrid and nauseaus tonight am really scared. Getting my stuff ready to go out to the west. Just checked on an air ambulance as my guts could not stand the pressure changes in commercial flying. Really pricy but that is what help is there for. SO glad I connected with the place out west. I HAVE to get out of the northeast, I have no clue what is going on, but not so good.

IF I am lucky and don't start barfing tonight, I am just going to do clear liquids tomorrow. I have no veins now for IV's and would need a central line under in my chest. BUT at least those are do-able.

Ate too much ice cream today and some scrambled egg. I PRAY it is just that. One would think that would go through OK, who knows with me? Anyway, thx. Rosemary

dear Rosemary
i hope today something is happening for you and i think and pray all the time - it seems the only way to go with this ridiculous legalality - so be it then if you can only get your life back is to drop the suit . xxx ((hugs))

yes just ensure you get someone who is experienced in stoma surgery who will not botch it up. i cant understand why the original guy who botched it has only just said come to the ER for him to take a look!? Or is it another consultant? he is a bit slow seeing as he ignored your request for help ages ago. >:[ in any event i truly want you to get it fixed asap but these people worry me in that there seems to be no accountability when things go wrong?

Oh, Rosemary... I really, truly hope things start improving for you soon. I don't understand why the last surgeon would tell you to go to the ER in order to see him... isn't that what his office is for? Geez.

Was the doctor you saw today Dr. S.? I have to say, it sounds like him with the silver nitrate- he used that on my incisions pretty much every time I saw him until they healed up. I actually saw him today myself, for my last post-op visit.

Everytime I read your posts, I want to respond in some way, but can never find the right words... just know that there are many of us here thinking of and praying for you.

OK this is serious. NOW I am spewing out a lot of diarrhea and my stoma is really active and I feel a burn where that silver nitrate was placed. There is no way to get that off as it has to sluff off. This was not granuoloma tissue as those are little separate nodules around the stoma. He put the silver nitrate on what is actually part of my stoma. I am really scared. I emailed my local stoma nurse and am going to call her tomorrow. This could be so serious. I had pics of the stoma and that it was really stoma that Dr. S put the silver nitrate on. Does anyone know if this can injure a stoma. I did not have time to stop him and he was so sure it was granulomas. He is a head colorectal surgeon of course I in a way believed. What a nightmare. Pray for me. Rosemary This is a serious road I am going down. NO MORE CONSULTS!

Ju,

We could have met my gosh. But we may not have known it. I did email him last night as I was so worried. I said what should I do and he just emailed back. Wait. I can't see the place he directly put it on as that is covered with poop. I will change the bag tomorrow and do as you suggest, not rub or scrub but just rinse off and check the area.

He did look over the stoma pretty well. A friend of mine said that maybe one of those cracked area from the finger exam at the other hospital may not have been healed and what he MAY have been trying to do was to further heal it. I have to say that the bag is now filling with gas as it has not been able to do prior. He was blown away by the cracks being put in my stoma at the other hospital, so maybe one of them which IS on the side of the stoma now being touched with the nitrate may not have been fully healed. Docs don't always tell all and he seemed very determined to put on that nitrate and like a light bulb had gone on for him. Seeing as he did tell me to wait, I will wait til tomorrow then change the appliance. I did email and got the response I got. No burning sensation today. For all I know, he could have really helped. At this point am not sure what to think.. BUT will eat lightly and as he said just wait. Thanks. Rosemary

Hi UC,

I thought he was on top of things as he is head colorectal surgeon, seemed very organized, helped me organize my presentation to him, seemed very professional in addition to being very nice and I did get a couple smiles out of him He did say that I had had enough surgery as I certainly did agree. My stoma revision doc in the office next door (I did not know Dr. S. had done way more stomas) when I chose the other doc nor did I know he was head of colorectal surgery. I got the impression he would be very good. My revision doc said I was very loaded with scar tissue and that any more cutting of adhesions to bring up more bowel for a redo may make things worse. I think he meant as in this could even trigger small bowel adhesion obstructions though he did not say that directly. But I had been through that prior to the 2007 surgery to rescue me from the 2006 pelvic organ prolapse surgery disaster and resultant sbo's. AND SO FAR NO SBO's since.

My guess is that maybe they are going with idea of a less than perfect form and function of stoma rather than another redo so as not to risk further adhesion issues. I THINK they do have my best interest at heart and hesitate to make matters worse by doing more surgery. BUT this stoma is so lop sided, the opening not centered, I have to assume all these weird positions for it to function sometimes. So right now I am just very confused. I know I did not have granulation tissue as I have pictures of that from the net and I simply did not have it. He would recognize that if he saw it he would have to. I really also am sure he knows the difference between part of a stoma that is splayed out from the center and granulation tissue. BUT he did call it granulation tissue.

So I don't know. I know he would not knowingly do anything to make anything even worse. MAYBE he was using the nitrate for another purpose; sometimes docs don't tell all, even the good ones. All he said for now was WAIT. I know I really liked him. Maybe he could have made me a better stoma, or there may be some technical reason that the stoma turned out the way it did. Who knows. So thanks for the vote of confidence. We shall see when I change the bag tomorrow.

I do think he is a good contact for the future if anything really goes awry and just by personality I sense very much that my revision doc very likely did his best for me. So certainly no mal intent. BUT just gotta get so I can eat more. For now I will just do what he said and eat the mini meals. Maybe doing what he did will really help????

So did he do your ileostomy? Is your stoma all crooked with part of it splayed out on your skin and the opening off center? Or is yours normal looking with hole in the middle? Also was your original surgery done open or lap? Did he redo your stoma lap? I read on some doctor rating site that he does not do laproscopic surgery but you cannot believe everything you read. Rosemary