esor

Hey all, I know this isn't even my place to write but some of these comments I read are extremely hurtful. RoseMary didn't even start this thread. If you look at the beginning, it starts by people asking how she was doing? Honestly, when a person's life is on the line, I think they deserve the right to question what ever they want. I'm not trying to change people's opinions. I'm just asking if you don't agree with a comment kindly choose not to respond v.s. tearing the person apart.

I read this forum for years before I joined (it's not necessary to be a member to read) and have read Rosemary's story also. Going by the number of views this thread has had, I think many people (forum members or not) have or are following it, too.

That said, I would rather offer support than criticism any day to someone in need on these forums - and I don't believe 'we' are here to judge just how worthy they may be of said support (or not). If people don't like what they read, there is always the option of scrolling on by, hitting that little thumbs-down ignore button, or contacting a moderator rather than make accusations, judge, criticize and issue ultimatums.

Is it frustrating? Yes it is! But whatever the root of her problems, Esor deserves the same common courtesy afforded every poster here.

Hi Rosemary - just in case you check back in I just want to say best wishes for your situation.

Rosemary and I text quite a bit and everything I've ever said, I've said to her and she knows I care and have her best interest at heart. I've been there daily via text trying to help her, guide her, and show her that she is ok and that she has a very good chance at getting a better functioning stoma. She also knows that I think she needs surgery and that trusting her surgeon and thinking positive are HUGE parts if having a successful surgery and healing properly. So, I haven't ever criticized her, but I have been honest from a nurse standpoint as well as a friend and she knows this. I have taken tons of time to help her whether she needed advice, names, and most importantly support. Just needed to put that out there. I think everyone has her best interest at heart and nobody wants her to suffer and ONLY want her to get better.
Lizzie

Deleted: Ain't worth the butthurt.

@esoR - Dunno what to say. Just wish you could feel a bit better, but I do feel for you. Truly.

Edited again after seeing B'Dereh's post: I dunno the past history at all. It's true that some people are manipulative, I guess, but from my point of view I'm just seeing a wave of anger and rejection from people who are angry that their advice hasn't been listened to. I've said this to other people on different forums in the past and I'll say it here: don't proffer advice if you are not prepared to see it ignored and unacted upon.

Post Edited (NiceCupOfTea) : 4/28/2013 8:30:02 AM (GMT-6)

Well, that's the doctors' concern, I would have thought. All I'm seeing is a group of people turning against somebody, rather abruptly and cruelly (in my opinion). Who knows? Maybe you are all 100% correct and I'm having my strings controlled by a master manipulator. I dunno, I really do not know.

Good lord! If I could be eating and this stoma was working I would be off traveling on cruise ships as I was for 4 years with my first stoma that worked prior to it stenosing at the fascia level.

There is simply too much scarring on that right side and this stoma needs to be moved by the doc that is RIGHT for MY specific problem of adhesion forming. Trust me if I could sit and eat a meal I would but that would precipitate an emergency NO doc would be able to fix. So........my logic as a teacher of 17 years and a masters degree says do not precipitate an emergency that can kill me. Rather, follow the nutritionists advice and take in the 4 Boost VHC's per day to keep up strength the best you can. Go on short walks, get some air, which I do. And do your best to find the best doc suited to your unique issue of fascia level stenoses and scar tissue forming.

Thx to those of you who have acknowledged that I did not storm off but rather have decided to focus on consults and medical appts to find the doc that is the absolute best for my case. I am meeting with a very knowledgable local who knows all the docs I have seen, the methods they use, their specialiazations, each doc no matter how great has their areas of strength. As my case is so unique this may not be solvable, but I want to do my best to try. Then if it fails, I will have done my best, the best doc for my situ, will have done his or her best, and that will be that.

If I do get a working stoma, you can bet I will be out there crusing again and ballroom dancing that I loved so much prior to when all the trouble started last March. So I can assure you, this is real, I am real, the 4th stenosed stoma is real. I have the official dx from my local surgeon who is going to try and help me sort this who by the way did his fellowship at CC. He is young and he is smart and compassionatye and he listens. He said I have sub acute obstruction at the stoma due to the stenosis, angulations and the 2 kinks behind it proximal at 5 and 10 cm. His advice, the liquid diet regime I have been following. If this does go emergent, he will be muy local go to guy who can then send me on to whomever or do what he can himself. So this is the reality.

So thx for those who recognize this is not a put on and thst I am only trying to survive and that this is real. Trust me if all was well I would be on the high seas! Respectfully, Rosemary

I'm not part of any 'group' here, other than as a regular forum member.

When any member joins this site, they are required to read and agree to the forum rules and guidelines, which include the following:

2. Ignore bothersome members. If there is someone on the forum that bothers you, select the Ignore button at the top right corner of the post.

3. No posts that attack, insult, flame, defame, or abuse others. Respect other members' opinions regarding treatment decisions. Decisions about health and well-being are highly personal choices. We should respect all points of view. Flaming will not be tolerated.

5. Lend a helping hand. A bit of compassion can go a long way toward helping people with life's challenges and reaching out can help alleviate feelings of loneliness.

Just because we've read Rosemary's story, regardless of how far back it goes, does not mean we know everything about her or what her life has been/is like in real life. When someone is struggling the last thing they need is to be judged and criticized for the decisions they've made. To suggest she's wasting anybody's time is degrading - this is a support forum, not the Judge Judy show.

Post Edited (nenagirl) : 4/29/2013 1:23:40 AM (GMT-6)

Ok, I did check back. I have to admit. I appreciate the caring, the frustration, the energy people are putting in in their own best way, sometimes wording seems hurtful and maybe is not meant to be? I appreciate those who do call attention to wording as it is so important on these forums as it is in personal conversation. That being said, I need input on the confusion that abounds about my situation and mixed messages I have been given at CC about what can be TRIED with warning that it can worsen my condition. Unanswered questions. Me being told I make the choice then no answers to questions on which to base my choice. My counselor that I am seeing says that I need answers and clarifications from medical professionals in order for me to make my best choice. Seeing as I am not getting them, I am turning to you for input and I know you are not medical professionals, but am hoping we can brainstorm a strategy I can use. For remaining questions I have that were not answered do I type out the questions and enclose a check to the doc I have June 11 surgery scheduled with and enclose a check for his time? There are only 6 questions.

The remaining 6 questions I had for the surgeon that I have surgery scheduled with at this point at CC for June 11 I could not get answered prior to leaving ohio and being driven 11 hours back home. I just needed clarification on a few points we had in our initial discussion end of March. After I had the bleed from the gi's ileoscopy that amounted to about 2 half bags of blood which the gi's assistant said that was quite a bit, showed pics I took with cell phone as one pic worth a thousand words, the NP of the cr surgeon said he is thinking of cancelling your surgery. I said why? I had checked with her to check with him on whether I should have the ileoscopy and trial balloon dilation in the first place. I did not just decide on my own to proceed with it. SHE said to go ahead as that gi was very good. I said why would the surgeon cancel my surgery when I did check with him thru you as to whether I should have the trial dilation. I acknowledged that the bleed afterwards was not my fault and not the gi's fault it was simply something that just happened. Then she said she would check with the surgeon and see if he is still willing to do the surgery. She emailed back that he is "still willing to explore my abdomen." Had she checked with him really about whether I should get the trial dilation in the first place????? Who knows. She did not state that. All she said was go ahead as the gi is ver¥ good.

OK tho I regretted having the scoping and the dilation and was scared due to the bleed afterwards which then bled a tiny bit a few days later and WRAP wood Not since and it has been about a week and a half so I THINK HOPE that my body has healed itself. Turns out that biopsies were taken from multiple sites that of course were all negative for everything as I assumed. Function of stoma worse since this as scarring resulted and narrowed the stoma more but it is as it is.

THIS WAS THE TEST that gave the road map for surgery. The report said "Stoma stenosis.......two sharp angulated areas at the 5 cm and 10 cm (meaning inward from stoma as in bowel kinks from scar tissue outside of the small bowel) mucosa normal biopsies taken.

The letter I received from the surgeon with whom I am scheduled for surgery a bit over a month away arrived at my home in Mass while I was out in Ohio. It basically says that I had a total colectomy and ileostomy due to colonic inertia which I did not have. When all together bowels moved daily in those divided moves that I so should have kept but that is history.

The letter goes on to summarize that I had stoma revisions June, Sept, and November for obstructive ileostomy output. Which is fact.

That I was there with similar symptoms (as in can only pass liquids). Then it says an MRI I had done back east did show angulation. (as the scoping also showed stenosis and sharply angulated areas of bowel behind the stoma) this does point to mechanical issues.

Then the letter goes on to say and I quote: "We will revise the ileostomy with full laparotomy where we MAY relocate it and, unfortunately, if this is for pseudo-obstruction reasons, things may not work out and you may have to live as the way you are (on Boost vhc and other liquids) or on TPN. In person he said life time tpn. I can also potentially make you worse with potential fistulization and infection. At the end of the day, I am in your service. (I have no clue what that means) You are going to think it over and let me know. If you want me to do this, it is going to be at least two to two and a half months before I can do it. Otherwise, you can consider having it done by one of my partners (then he tells of his TRAINEE) who could do it sooner."

OK for all of this surgery to happen due to my veins and even picc line vein sites having been used and scarred and hardened, this requires a port-o-cath. I received an email thru the on-line service that I had been scheduled June 10 for a permcath for dialysis! I was like WHAT?????

So I called the radiology dept where this is going to be installed June 10 and said there is an error. I talked to the scheduler and she said thanks for clearing this up we will change it. SO FAR no change is reflected on my online record. A tech did tell me some important info that often surgeons want a subclavian port which if it occludes you can lose every vein in your arm. However if they use the inferior jugular vein and if that port-o-cath occludes the veins can sort of form new branches in the arm on that side and you don't lose all your veins. She was one who actually participated in this as a technician this part did not come from the scheduler obviously.

You all have to believe me on all this as I obviously wouldn't have checked back in and spent all this time responding my summary of all that has gone on re: communications at CC.

How do I get answers from my surgeon to be? Do I mail a check for his time and my 6 remaining questions. i want to know if he plans to use an adhesion barrier. I wanted to confirm that he was a proponent of sharp dissection as I think he did say (vs electrocautery which causes more inflammation), and then there are just a few more?

They were very much into "all your choice" but then if you ask questions on which to base your choice, then I was told I would have to save questions til chest port installment day June 10 OR make another appt prior to the surgeon leaving the country May 9 and travel back the approx 700 miles to be face to face to get answers to 6 questions. They weren"t questions that involved him being able to make a guarantee or anything and I don't have the list in front of me. BUT the fact remained that this is MY LAST SHOT at a stoma with all the "I could make you worse" warnings. I feel like I should be able to get my last questions answered prior to him leaving May 9.

Where would the pseudo obstruction issue come from? SO FAR wrap wood, I haven"t vomited and praying I don't get into that. And SO FAR as long as I stick to liquids the kinked bowel in back of the stenosed stoma seems to be passing what I put in.

For these reasons, my counselor said it seemed to her that I need either my questions answered or I need another md to call on my behalf and see what is up.

To complicate matters more, my local PCP, who has been the best I have had so far, said if I step out of the system, have surgery, then he will no longer be my PCP. The local surgeon that did fellowship at CC and is very nice and was just monitoring me said that it is better to arrange a surgery than to have it become emergent and to still do while I am strong enough. I actually asked if he being "in the system" had the skills to do this? he thought very highly of all the surgeons at CC. He is young and obviously has not been on earth long enough to have the experience of the doctor I have scheduled for surgery at CC so certainly no bad reflection on him.

I asked one of the nurses at CC if something goes wrong and my PCP does drop me can they help me find another. She said MAYBE one of their case workers could but that I HAVE TO BE PROACTIVE!

Well, if this mechanical issue of the stoma that was found definitively on the scoping cannot be fixed "in the system" around here and I have the chance at a working stoma MAYBE moved to the other side, then why would I not go to CC.

My understanding of pseudo obstruction is that one is violently vomiting and in ER's and on IV's and no mechanical blockage is found. With me SO FAR anyway, no vomiting and a mechanical stenosis has been found and confirmed at the stoma level. So what is all this about possible pseudo obstruction?

It's obvious that I cannot live on Boost VHC forever. I did vitamix a can of chicken noodle soup the other day and turn it to liquid. I mean it was LIQUID for heavens sake. It clotted up behind the stoma. I can't figure it out either. But it is as it is.

Sorry this is so long. BUT these are the mixed messages summarized as of today that I have from CC. What would you all do if you were in a situation of making a decision on which your life depended were getting all these mixed messages and had to be the one to decide?. You could be made worse, but as it is, this is my 7th month on liquids, maybe lucky to NOT be worse, but cannot last like this or stay strong enough for a surgery forever like this.

I can see why my counselor who is super just said you need medical advice. What all is your take? I am at a loss. If I was fully nourished and not just skimming by so to speak, I would be in better place to make a choice.

I can assure all this is totally real and is the source of my current confusion. Yes past trust issues cloud but that aside current data I have been given really clouds it even more. Am trying my best to focus on the now and make best choice. I am not drugged and am totally the clearest I can be.

Consult at Johns Hopkins back in Dec. prior to CC visit just said wait til May and we will put stoma on other side. No confusion but also no warnings. Warnings are good. confusion not so good.

The early satiety on even liquids was thought to be small bowel intestinal bacterial overgrowth. One gi I was given there tried two antibiotics one that made me unable to get out of bed too dizzy. One that gave bad diarrhea even thru stenosed stoma. Other gi that did the scope; remember I did not ask for two separate gi's? He said try Xifaxan then never gave me an RX for it.

My friends are all like how do you decide? who is right? do they within the same dept communicate gi's with surgeons?

If responses, please try to focus on helping me sort the mixed messages I have been given. You all have knowledge of this and I know are not doctors. BUT you have been there and done that so to speak. That is why I value input on this decision making process. IF this all goes emergent the choice will be taken from me, but I am hoping it does not. OUt for a walk as my brain is tired. BUT this is my situ. Sincerely, RJ

Since this thread is nearly 10 pages long, I'm locking it. Rosemary, it might pay to repost your second last post and start a new thread if you want to?