Hello old friends and many new....Its been a very very long time and SO much has happened, but I wanted to comment here first and foremost. There are many of you who are not wrong in what you are suggesting to Rosemary. Many of us have been around a very long time with her and personally I speak to her almost daily via text and I hear what some of you are saying when your concerned as nobody has walked in her exact shoes, but I have known Rosemary for sometime and I have to agree with many of you who fear for her inability to trust any doctor both past and present, inability to try and focus on the now and try and move past the bad experiences, and most importantly understand that she is stable, doinf fairly well considering, and NOT DYING!!!! She has a very good chance of living a long and prosperous life with a functioning stoma....Rosemary, you know I love you to pieces and have told all of this to you on a daily basis!! I agree with those on here that are concerned for you and I have told you myself that we need to get you thinking positive, trusting one doctor whomever it may be, and understanding that you are not an impossible candidate for revision or relocation, the surgeons arent avoiding helping you becuase your too high risk, your very stable and as weve talked about the ER or surgeons would have admitted you if they were concerned about bleeding, infection, obstruction, sever malnutrition, etc.
I truly want you to not take any of what others have said in any negative manner. It is very true that none of us have walked in your exact shoes! BUT as I have told you and you know I was operated on at CC in an emergent situation, with a complete obstruction, fever, failure to thrive and 87 pounds with a feeding tube, and a history of major adhesions, very little bowel, complications, bleeding out, clots, ICU at CC, and it was my fourth stoma!!! I did not have the best experience at CC overall and you know my feelings regarding my situation there, BUT you also know that even having to be transferred there from six hours away and have the surgery done with an unknown surgeon due to the emergent situation, THEY SAVED MY LIFE!!!!!!
I am very worried about your emotional state and its out of pure love and friendship and you know this!!! I have been praying for you every day despite the trauma and unfortunate situation I am in myself currently. I truly....from a nurse standpoint as well as your friend, believe you need to see someone to help you emotionally. I fear that these doctors/surgeons are more apt to not help you because of the emotional state that you are in and your inability to trust any doctor, surgeon, PA, nurse, etc. This is a HUGE part of being able to undergo and successfully recover from surgery and unless you were at risk of harming yourself or another, everyone is right when they say that the psychiatrist/psychologist/social worker would have to honor patient confidentiality. I know you believe that your having these issues getting heard and/or listened to becuase you have a case that is too high risk, too unknown or complex, but there are many of us who have been in your same situation or in my case, worse situation, and we were able to get the help we needed in order to move forward. I know that you are focused on what the surgeons have mentioned in your consults.....such as that they cannot promise they are going to be able to fix your situation, that you could end up with more issues, more pain, and that you have the chance of needing TPN short-term or lifelong. PLEASE!!! PLEASE!!! listen to me and your dear friends on here who ALL LOVE YOU!!! The surgeons HAVE to tell you ALL the MANY MANY complications that could happen and this DOES NOT mean that they are going to happen. ANyone who undergoes any surgery...it could be a simple appendectomy or as involved as our bowel surgeries and NO MATTER WHAT....each individual is at risk for infection, bleeding, pulmonary embolisms, and even death and thats just to name a few. As I have told you, you have a much greater chance than some...including me, of having a VERY successful stoma revision and/or relocation without any need for TPN. I have no colon and short gut syndrome with a history of dumping syndrome and I still was able to have a successful relocation of my stoma when necessary. IN terms of this bleeding from the scope (which is still the first line treatment for anyone with bowel stenosis or narrowing AND although Remzi didnt officially order it himself, I do NOT think he would have been opposed to his number one GI man Shen trying something that could be proactive in avoiding an invasive surgery) I think you have been healing wonderfully. It is not all that uncommon to have some bleeding with dilation. Although its not normal, if it were life threatning or even putting you at any risk they would have admitted you immediately from the ER and as weve talked about your HGB was not abnormal nor where any of your other labs. AS far as your stoma being "so much worse" as you say than before the dilation....PLEASE PLEASE remember that you are still stable, you are still having output, you are not partially obstructed or fully obstructed!!!!!! I know you dont like the color of your output, BUT you ARE HAVING OUTPUT!!!! and as I told you earlier......If you think you are so much worse, then you should have stayed at CC and taken yourself to the ER and let them determine if you need to be admitted. AGIN....YOU KNOW I LOVE YOU!!!! I UNDERSTAND what your going through and we have both had hard journeys, BUT even with all my crap Im going through, hospitilizations, upcoming surgeries, and not being fully diagnosed...I AM NOT DYING EITHER :)Lastly, as far as your cachexia.....you are still very stable and your albumin and other protein binding labs, minerals, and electrolytes are all within normal range. Youve gained weight and thank goodness your body has held up and you have been unable to avoid TPN or tube feeds!!! THats great, all of this is very positive and I just want you to see it written out again!!!! I am not trying to discount anything you have been through or are going through and I COMPLETELY agree that you need a revision and preferably a relocation due to the multiple revisions made on your right side, but if they believe they can do it without relocation then we all have to trust whomever you chose to do this surgery!!!!!! YOu know I am on your side 100% and that I love you dearly!!!
To everyone....thank you for you kind and caring words for Rosemary and for those of you that feel we may have not been thinking about her first and foremost, I hope you know that we are and I am and that I just want her to get better emotionally as well as physically. They are both so important to healing and living life!
I need to update everyone on what has happened to me in the last how many years!!! I do not even remember where I left off on here, but life sure has taken a road that I never expected. I am still struggling very much and I have now had 8 open surgeries and have one and possibly two more coming in the future, but not until I can get a true diagnosis with all of my new issues. I am not sure if Peltzier (Sarah) still posts on here anymore, but if she does I would love to ask her some questions. I need to get on here and catch up on all of you as well, both old and new!!!! Love to you all!!! (((HUGS)))) XOXO