OK being left to fatally reobstruct before anything is done

All right, This is beyond serious. My ileoscopy that had to be done with pediatric gastroscope (smallest scope going) I was TOLD did not show a stenosis. I was drugged so did not see on monitor. I was then told that NOTHING can be done! I was later told by other source at other hospital that doing stoma revision is malpractice despite obstructive issues unless you are continually obstructing and there can be nothing lost by them doing a revision.

OK, so being left to die.

THEN, Mt. S emails me and cancels saying nothing shows on tests so nothing to do.

Just because nothing shows on a test done with smallest scopes, smallest catheters for dye, nobody able to get a finger in my stoma without horrific tightness and pain, and the stoma unable to pass anything but liquid, solids blocking in back of the stoma for 8 hours and me having to induce diarrhea to get out baby food (I was not believed on this one) and not being able to pass even liquid if I do not lie on the side of my stoma, and having to live on basically liquids, All matters not. Nothing being done. I am going to freakin' die of a stomal narrowing/dysfunction and nobody in the medical world gives a flying crap.

Due to some other business aspects of my case I will not be able to post for awhile until I get the needed help and try a whole bunch of new places FAR away. I think most of you know what business aspect I am referring to (does not involve any current or future providers.) So my story is bleak and chances of survival are low. I HAVE a stomal stenosis by symptoms, but with lack of imaging or test results, "there is no problem. Therefore we are not going to deal." WIsh me luck and in awhile if I am still around I will post. HAVE to get with more protein, or some TPN, or whatever but am getting too weak to fight.

I did contact a patient advocate who is going to try and find out for me what the heck I should do. I fought this for as long as I can. If euthansia were legal I would sign up in a heart beat as this is too painful a way to go. Thanks for all your support. The medical world is almost impossible to navigate once one gets into trouble. AND I know that most of you know the surgery that put in me a position of needing a stoma was not needed upon review. So makes it all the worse. Not a happy way to go. Rosemary

Rosemary - In the mean time really try to take the suggestions we have said regarding nutrition.

Ensure is coming out with a new product that has the consistency of juice, but is loaded with protein. I think it is called Ensure Free. Also, a juicer is awesome for nutrition.

Go to a health food store or GNC and pick up some powdered vitamins that you can mix in skim milk. The kind I had bought from GNC were great.

You can survive on liquid nutrition if you have to. Of course no one wants to live like that, but it can be done.

I know this is much easier said than done in your case, but try your best to relax and stay positive. All of this stress cannot possibly be helping matters. There is nothing more you can really do than what you have done/are doing. Have you thought about getting into yoga? I know that sounds crazy to even mention, but a few times during my severe disease, when none of the meds wanted to kick in, I resorted to yoga and relaxation methods. They didn't cure my disease, of course, but I definitely started feeling better emotionally and was more at peace with the situation.

 

Post Edited (uc_free) : 5/23/2012 7:21:54 PM (GMT-6)

OK thanks for suggestions. I am just so weak I can't get to the store and so on. BUT will send neighbor and keep vitamixing the chicken. and get a juicer etc. I am doing a lot of ice cream for calories as those are important, but I think the sugar is getting to me. If I had a disease, places would be rolling out the red carpet but because I was originally injured by original docs, saved the best I could be, then fell into issues, I think this is why nobody wants to deal. BUT I make it very clear that my goal is to get dx and cure for current situation and that I am well adapted to being an ostomate.

I do think sending records ahead is a HUGE error. On any future consults I am simply going to present, tell my symptoms, and ask for exam of my stoma for skin level or fascia level stenosis. In absence of peristomal hernia which was ruled out by my current place AND by some peristomal hernia specialists that I do trust (yes there are a few) that issue does not exist. The only other issue that could be is the stenosis. The stoma is more swollen and protrudes a lot more and is much longer side to side (like a balloon being squeezed) and not working enough to push out anything but liquid. The pain really gets to me. You are right, this is fixable, I just hope I don't slide past the time when it can be successfully fixed. I will continue to consult with the places I have lined up but then I have no clue. Once they get ahold of those "functional issue records" I am done for. SO I will present with my symptoms and ask for finger exam of stoma. THEN as asked I will produce the records. OR I could just present as new and have all the tests again?

Rosemary, sorry that you're suffering so much.

I remember a while ago that you mentioned a counselor that you trusted. Wondering if you're in touch w/her both because she was helping advocate for you and to help you cope with this difficult time. I know you've mentioned before a lot of hard things in your past, and anything this serious is going to trigger all that stuff too.

It does seem like you jump right away to thinking people are abandoning you and that you're going to die.... I understand why things feel this way to you, but just ask you to consider that these feelings may be about more than what happened w/a particular doctor, and that if you can sort it out a bit, you might not be quite so overwhelmed (no judgement here .... if you have trauma in your past, it's just a fact that trauma in the present is more complicated as the body and mind are primed to respond in particular ways, e.g. you might churn out way more stress hormone than someone w/out the trauma would).

I know it's very hard when you're feeling weak, but you have a strong will to live and thrive, and now is the time to tap into it. Counselors sometimes do sessions over the phone when there are issues w/physically getting there.

Hang in. And don't forget that supplements, e.g. benecalorie or absorb plus can be ordered over the internet.

Good news Mt. S. still agreed to see me. All I did was ask why can't you? I guess the logic got to them. So that is on again. Slept a LOT last night. Still weak from no food, etc. Gotta get the energy up to make all these nutrients. I need a maid and a hired gopher. RJ

If this cannot be corrected surgically, inquire about TPN. Many people cannot eat for a variety of reasons and TPN is given. I know of a woman who lost her stomach due to cancer and she's been on TPN for over 20 years and doing well.

Sue

Well, no doc puts a patient on TPN as long as there is no absolute need.and i don't see this need in R. case as well - at least currently. TPN may cause severe side effects and life threatening events and has to be justified.
A liquid diet is ok and can guarentee sufficient calories and nutiens especially as R. has no underlying disease. You just have to have discipline. But your body can live from Ensure 3-5times a day if you don't have a severe digestive disease with malabsorbtion etc.. I am sure that your blood levels are fine. Also, i cant see the reason for still eating solids or semi-solids when you know you don't tolerate them and at the same time you worry about survival. That does Not seem to make sense to me. Just go on a fulll liquid diet with high caloric drinks. This should solve the nutrional problems for you and give you enough time to get help with the stomal issues.

Got this glowing note in the mail today from ileoscopy doc who said good news no stricture. RIGHT! Stoma still stenosed in severely all I can really pass is liquid. Glad I melted down that mac and cheese do not know if that is out of me or still in me who knows. Anyway, I looked up the pediatric gastroscope that he used and it says "for Stenosed body parts." So there you have it. I have no clue why the place I am going is in such denial about the stoma stenosis. It is obvious that the lumen is closed, poop cannot get out of there. They don't want to deal but isn't it negligent to say all OK if it is not. This could become worse. I am seeking help as I can, but jeeze. So lets redo this stoma and I will take my chances. Now that I know a LOT more about this, their chalking this off as functional seems all the more stupid. How stupid do they think patients are. A simple admission of for whatever reason your stoma has stenosed. We do not do revisions here but we are referring you to this or that place who does do them would have been just a fine thing to say and not be wasting so much time. Not sure what the gig is here, but leaving a patient in danger, nothing I would do if I were a doc. Rosemary

If you don't get any help at Mt. Sinai, I'd like to gently suggest that you get in the car (with a friend if need be) and show up at the ER of either the Cleveland Clinic or Mayo - whichever is closest to you. Time to stop messing around with this and get to one of the top two medical centers in the nation and find a solution!!

Awesome Rosemary. So good that you have docs you trust and can see again -- that will do so much for peace of mind. Let's hope it's not necessary to see them for a long, long time, though...

I'm so glad to hear you are doing well.

Yay, you got sprung !!!!   I am so glad that things are progressing nicely and you were able to have surgery and get things fixed up.   Looking forward to the details of your next trip

rosemary i am so happy for you!!! When you have your strength back may be give the other 'experts' a call to tell them that you had revision surgery are so much better, and they might want to rethink their practices. x >:((