ROSEMARY UPDATE

Well, Tuesday I went to Mt. Sinai where they easily determined I had a stomal stenosis that I knew I've had for 3 months. Not sure how my current place "missed" this BUT, I won't go on.

Right after Mt. S docs did finger check and I guess temporarily stretched the stoma, I passed gas like crazy and felt normal like I have not felt in 3 months.

But then when the stoma closed in again, I developed this serious pain in my lower right side in the Cecum area of my unused colon that had all the mucous in it on the CT scan. THEN at 4 yesterday Morning I was off to the hospital in the ambulance YET AGAIN! Severe spasms and pain like stool and gas TRYING to get out of my stoma but not. The spasms were so bad that I finally gave in and took the Dilauded offered by the ER. They hydrated me. THEN were going to send me home. I said everytime I take anything by mouth these horrid spasms start. A friend said it looked like labor pain type spasms only they were intestinal. So I called my PCP, the patient advocate, a social worker, then arranged for an IV later in the day at a naturopathic place. The ER Doc called Mt. S to see if they could move up the surgery but they could not.

FINALLY something must have clicked and they admitted me. THANK GOD. Dilauded is nothing you can stagger home on PLUS I needed about 4 bags of IV fluid. My veins are shot, but today I could slowly sip liquid, but I said without the IV's I will dehydrate. It is only a few more days til my surgery at Mt. Sinai so my thought was why can't I stay in the hospital and get the IV's and the pain meds. BUT NO, my local hospital had to send me home with no pain meds and certainly no IV's.

So the plan is IF I can stay out of the severe spasming pain I will be at home tonight, go to my PCP's office tomorrow for an IV, then Saturday I am being driven to Mt. Sinai 4 hour trip. A friend and I are staying over and I will be admitted Sunday as planned for Monday 6:30 a.m. stoma revision local to the stoma AND if needed big adhesion take down. I am terrified, BUT SO GLAD I FINALLY FOUND HELP! I cannot believe my current place has said this was all digestive (the surgeons there said that the GI who is right on says this is surgical). The stenosis of the stoma is SOOOOOO obvious.

So pray for me. More surgery and the resultant adhesions from that could kill me BUT I cannot go on like I am with a stoma that is not putting out poop so am having to live on clear liquids WHEN I can drink them and having all this pain. THis is NOT LIVING. So, I need to take the chance. I am going to Alexander and Adrian Greenstein in whom I have the utmost confidence that they will do the very best they can for me. The rest is up to my body and the grace of God. I am praying big time. Say a prayer for me and hopefully I will be back with you and my travel and all the things I love. Rosemary

Post Edited (esoR) : 5/31/2012 9:37:11 PM (GMT-6)

Praying it all works out.  You will like it here.  The staff is wonderful; very attentive in my experience.  As it turns out, we will just miss each other as Sunday is the day I am scheduled to leave, lol. 

Prayers being offered up for you.

When we spoke, you were concerned about the output and pain and sorry to hear that you did need to go to the ER. Go to NY early, great idea. Try to stay relax and hydrated, this is right around the corner!!!! Hang in there

Fingers crossed Rosemary! I wish you nothing but the best of luck :)

So sorry you had to go through this... again! Praying that everything gets resolved at Mt Sinai and that you get treated wonderfully!!!

Geesh, they admitt people for a kidney infection but they sent you home?? Your condition sounds serious....I just dont get doctors. Hope all goes well with your surgery and you make a speedy recovery. Hang in there!

good luck. youll be well soon.

OK guys, I totally lost it while getting my stuff together for NYC. I found this piece of fudge in the refrigerator, some frozen yogurt, and a bottle of Baileys. All right so alcohol is a thinner, so is the chocolate and so is the frozen yogurt. Tomorrow I start on all clears for 2 days. SO FAR, God I pray it stays that way, I have not had any of those horrid spasms of pain. WIth a severe stoma stenosis one either goes a LOT or not at all and the poop pools in back of the stoma. Today all day after the IV's at my PCP's I had just little sips of boost clear liquid Breeze nutrition drink. All went pretty well. Then I had white grape juice. SO THEN I had the fudge, the frozen yogurt and a heck of a LOT of Bailey's. I just got so worried. So far so good. I am really taking a chance, BUT I may not make it depending on the amount of adhesions they find, so I had a little party shall we say. Could be my last. I sure hope not, but we never know.

So I am glad I am at a spot where the best attempt to fix me up will be made. I think these Mt. S. surgeons are very brave to take my case. They didn't seem freaked out at all when I told them all I had had done. They did however plan accordingly. I guess no lap if one has had too many open surgeries and they are going to try and see if just the stoma has to be fixed just at the stomal area. So it sure sounded like they were using common sense considering my situation. MOST OF ALL, they LISTENED! I WAS HEARD! and the older one says we have to get you back on those cruise ships. So I think I have the best shot that I can. So off to NYC in the a.m. sure hope my little party does not back fire. Am going for a walk around my neighborhood and sort of say good bye.

A neighbor of mine who is very pretty, all together, and VERY physically healthy had a horrific nervous break down irreparable from a family situation. She TOTALLY lost it and is now in a very different world. It is so sad to see. She COULD have gotten help and recovered, but it is pretty much beyond that at this point. So, here she is, in this very different world. She had her Masters in counseling and was really good with college kids. She ran exchange programs to Europe. BUT MOST OF ALL she is healthy and well in body. Such a tragedy that she cannot enjoy and revel in her good fortune physically.

Here I am in my situation due to what was really an unneeded GYN surgery with unneeded sigmoid removal that lead to the ostomy that lead to ostomy failure and now facing this. So unreal how so many people fall into horrid things. BUT I say if one has their physical health I would think that other things could be dealt with but maybe I am wrong. Just something I think of when I walk by her house. So sad. Rosemary

Thanks Cece. WOke up with a TOTALLY full bag of watery diarrhea (from that Bailey's) That was NOT a good idea to do night prior to leaving for the hotel in NYC a four hour ride. I postponed the ride from 9:30 this a.m. until a noon take off so I could get a handle on the diarrhea.

I REALLY hesitated to take immodium because I did not want to create a heavy stool that could not come out but the diarrhea would not stop and I was dehydrating. So I took 4 immodium chewables and things are slowing down. Then I had some water. So back to bed for some more sleep.

I am SOOOOO scared. I am VERY glad I found help. BUT with the first hospital saying all this was functional (not structural and all the tests showing NO ISSUE) yet the stoma not working now for a very long time, all the recent issues, then all the spasming pain of wed and thurs, there is some issue that needs addressing. I have to let go and trust these 2 docs who seem so on target. I just need to have no more stomal finger exams as that I know is what triggered the spasm pain issues. IF that got started again we would not be able to do the surgery. So I will just have to say no if they want to do that again, at least not while I am conscious.

Well, back to bed and some more sleep and have to trust. YOu are right, trust is hard even when my gut tells me I Have found the right ones and after so long of suffering. ROsemary

Thanks Karen. Rosemary

Gilda

I will update as I can. Am in nearby hotel in nyc now in case this becomes emergent prior to admission tomorrow. I will let you know how it goes. These docs (The Greensteins father and son) did a stomal digital check and said TIGHT!!!!!!!!! Then said to me When can you get here for revision. Then in about 5 minutes they mapped out their conservative to possible complex approach and arranged my surgery and confirmed this was basically emergent as I knew. These other tests can appear just fine but if the opening in the stoma is severely narrowed and tight the finger test is all that is really needed. Will let you know as I can how it goes. Would be worth your while to come to NYC as nobody can live this way. Rosemary

Wow 48 hours you are eating!  Hope this is the fix and food will pass fine.  x