esor

Rosemary - everyone on here realizes that you have a very serious and very complex medical case. That's one of the reasons we are telling you to stop hopping around with Dr.'s. In the US, Mayo Main Campus and Cleveland Main Campus are probably your best chances for a successful U.S. surgery. It takes long term interaction and tracking by a single doctor to understand the quirks of your medical issues. You have mentioned an adhesion specialist in Europe - the adhesion specialist PLUS a good colorectal surgeon are probably your best chance overseas. The closing stomas are not your fault. The multiple stomas are not your fault. However, you are not helping yourself by running around going to different specialists waiting for someone to tell you what you want to hear and that "I'm going to cure you." No doctor is going to be able to cure Adhesions. Improve and prevent them, maybe, but not get rid of them entirely.

Cleveland probably acknowledges your ARD issues...that's why they are saying the only might move your stoma. If you have a mess of adhesions already (indicating that you form a huge amount of adhesions), then moving the stoma would create more issues and more problems. If they just tried to pull more of your intestines through the already made hole, then that might create fewer adhesions. If they remove the scare tissue around your crooked intestines, that might help. They don't know until you are examined. Some medical problems have no clear cut solution.

I'm facing a likely diagnosis of a disease appearing in only .00375% of the population. It affects the whole body. If I do have this issue, I'm still going to Cleveland for both care of that disease and care for my color-rectal issues. They have the best chance of helping me.

You do need to get over your doctor hopping and listen the most reputable person you can find. There is no magical cure for your issues. You can improve your situation, but you will always have the adhesions. You need to learn to trust the professionals and not freak out/overanalyze certain situations (for example, if something doesn't come out of your stoma in 3 to 4 hours you freak out and chase it with grape juice...I often don't see output for a meal for 12 hours. If you start throwing up, you have a blockage issue but I have never heard you comment on throwing up).

We all wish you well and want you to get the best help you can. I don't think any of us think your Dr. hoping and mistrust is helping you. You need to work on the psychological side as well as the physical side.

Thx somedude, active, and mossmi. Yep takes a lot to stay positive when one is not the garden variety patient. Maybe dr R does get the ARD thing and maybe would be impossible to move the stoma or would make things worse. Hadn't thought of that. The main campus of the mayo would likely have been my better bet last time. All depends on which doc is the most familiar with the whole ARD thing. I have one more try in me. I had a chance to ask dr. R one more short list of questions. They are mostly to do with minimizin adhesions. I think he has a LOT of experience hopefully with adhesions but we'll see. Well up to slug a diluted boost vhc and juice. For now gotta do what works. We shall see what I hear back. Lots worse since the dilation again not the garden variety patient. Thx guys.

"I have to say, the one thing that kills me is that there is a barrier out there that might give you a better chance at success, but it's not available in the US. Sometimes capitalizing works, sometimes it sucks"

Where's the barrier being done, Esor will go there.

I think the barrier used in europe is sprayshield made by the covidien co. Right in my home state of massachusetts yet not marketed here in the US because it is not lucrative for covidien. I did check with some docs in germany who use it. One is a known quack or letys say there are mixed reviews. I did correspond with him ages ago and he said if a sytoma was needed he would use sprayshield and then have a colorectal surgeon do the stoma part. I said what surgeon woud you use and what university affiliate. B'D validated my dobts when I wrote that this sprayshield doc should have come up with names for me and coukd not and was no university affiliated which is very important in germany.

I also checked with a university affilated surgeon in germany who was sympathetic but siad too complex. Yikes!

My first stoa surgeon here in us now retired suggested asking about "compassionate use of sprayshield" if not yet fda approved. I have asked all docs about that and they all say if it ere good the fda would have approved it.

IDK, the US is often times not the world leaders in all frontiers that we think we are. I also had contacted a doc in London suggested by a person on this forum who was trying to help too. That doc said stay where you are as tthey have all your scans. I had explained the severity of issue I was in. That was with the totally closed stoma. This one is fast on its way.

Thx for the idea tho the brainstorming of products etc does help. I had called covidien co. To see if it is ever used here I US with Lcompassionate use" and was told no.

This whole thing is going to go emergent or I am going to get too weak to tolerate a surgery. I am feeling it already and latest labs down from previous ones. If anyone in europe has had or heard of anyone who had sprayshield successfully used let me know. Course the docs here could be right too as maybe would be approved by fda if had been proven out? But a doc in boston on board of adhesions organization said "unfortinately covidien decided to go in another direction with their US marketing". Meaning maybe the product is good but covidien may just make more here in US by promoting their other products? Who knows. R

Alison

Thx. Any side effects to lexipro? Sounds good.

PSUDOC

How long have you or will you be taking Lexapro?

I am way past surgery, but am in sich a neg funk I can't believe it. I have always been against taking anti deps because I think if I have depression, it's part of me and should deal with it. But right now this is lasting too long and seems to be getting worse. Maybe something would help, at least temproarily?

B'D, I have been on Lexapro since September. Depression can be treated with medication - although therapy is helpful too. For me, the meds alone were enough to clear my head. I expect to be off it in a few months as my depression was caused by dealing with a chronic illness and when my surgeries are done, I don't expect to need it.

^^ I totally agree with all notsosicklygirl posted, especially this part:

No one has walked a day in your shoes and no one knows exactly what you're going through nor can they tell you how you should feel.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I wish you all the best and hope you find some recourse, Rosemary.

Thx not so sickly and nena and BD,
Yes, as you stated above, I have exactly one more try at a stoma either moved to the other side or in same area tho not sure how that would work out.

Having the unique situation of perhaps "forxen abdomen" or at least "partially frozen abdomen" from adhesions, even the best stoma maker in the world may not have success due to my unique situ.

Part of my job is to be sure whoever tries to help next is extremely aware of the severity of my adhesion issue and has extensive experience in dissection of adhesions at just the right tissue planes of dissection and so on. Out at AZ I was told that 6 sheets of seprafilm were applied. Then of course the unconsented colon removal thus adding to the adhesion issues. The op report mentioned nothing of seprafilm being used. Op reports do mention that as my first good stoma that lasted 4 years did mention.

Then the whole history of how need for stoma came to be, yep trust issues abound. Hung out at CC hotel a week from the smalled intestinal bleed from the attempted balloon dilation of stricture and so far so good, so heading home 11 hours today. Will just have to assume the bleeder healed itself off and if so I will be very glad I did not let anyone back in there. Very tough calls to make. The rips in my stoma from that healed in with scar tissue and then disappeared. Overall function of it is worse.

I had asked prior to having that done how scar tissue on the outsode of. Bowel deeper in than the stoma as the gi went way into my mid ileum how the scar tissue on the outside of the small bowel could be cracked up by expanding the bowel (unlike crohns people where I think the strictures are from within the bowel itself). I am not versed in crohns as I don't have it but that is my understanding. All he said was I can do some great things and this could avert a surgery for you. What was I to think?

So heading home worse. Was told ask my remaining 6 questions june 10 the day before surgery for new stoma that may or may not be moved to other side. I said I needed them answered way prior to that as it would afffect my choice of what to do. They said you could make future appt to ask in advance of June 10. That would mean another whole trip out 11 hours by car. More expense. Not sure about flying with a partially closed small bowel. Not so sure what the big deal is about a doc looking at 6 questions and dictating a couple answers to be emailed by a secretary.

But it is how it is out here at CC.

So yep lots to decide. I have a doc back home who is very good and into Lmonitoring" my nutrition levels with the drinks I have having to live on. He is very knowledgable and upfront. I think at this point I need not only someone to talk to but someone very knowledgable in the field of my specifics. This being not at all garden variety stoma making. Plus he is into patient education which I need to make an informed choice.

BD that is exactly how my fax consult with the private clinic german doc went. He makes such great claims for cure of frozen abdomen. Several people here in the states have claimed great success with him and sprayshiled. But if it is not used in germany and he is in germany is he using it only due to being in private clinic? The stories told here tho about him are miracle cures but these people don't have stomas. And that was very odd that he could not send me names of stoma surgeons he would work with. He just said "whoever is available". Even I did not fall for that one.

I have tried to contact covidien and ask for results of studies on sprayshield adhesion barrier and have gotten nowhere. I did get a lsit one time of the countries it was used in tho. A lot in the middle east. I asked my doc here about it as he is from turkey and going back there in may. He did not seem to know much about it.

Yep so such a horribly unique situ. At CC I was told yep we can go in and explore your abdomen but we are not sure we can solve your problem. Well that begs some questions to which I never got answers. So what am I to think? The op date still on the books for june 11. Will need chest port implanted june 10 for venous access. So this is big decision with a need for a lot more info.

Course if the whole thing goes totally emeergent in meantime, the choice will be taken from me. In meantime we can hope for liquid in liquid out. Stoma now hardly can move to push that out. Have to lie on my right side and kinda let it drip out. This is the braintwister of all times!

RJ

This Sunday starts the annual fascrs meeting. I wonder what abstracts/information, for example related to you, will be submitted? Also, how do you receive literature that was discussed at a symposium? There's new lapo techniques, and new information on stoma's and their complications (that's Sundays workshop.) Perhaps something will come to light. But for now, keep you head up. I understand your distrust in doctors. It happened to me. And once it happens, it's awful.

Keeping calm will help navigate your intuition properly. If taking an antidepressant will help, by all means take them. Your intuition will get you where you need to go. Trusting doctors, trusting in others informative opinions.

Good luck, Rosemary, hang in there!

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

Lizzie