back to the ER Rosemary

I am going to die. It will not be long. I am terrified.

The plan is to leave the stoma drainage tube / stent in until the 19th to help me drain thru the Stenosed stoma and toi stretch it open. The deal is that with the presence of the tube there will be some pain so I understand that. And the tube is definitely needed. The resident on sunday actually did a very good job putting the tube in. But since then I have had to change the bag twice and the tube has not worked as well since.

Today I was in so much pain I just could not walk much or sit or even lie comforably. I finally went to the ER at 6 pm. This was different pain than the other day when all backed up but still significant or I would not have gone.

They take me right in as it was not busy. The nurse was at first very nice and could not believe the number of strictures I have had and surgeries. Then the ER doc came in and said bowel sounds were good (not squeely like sunday when the pain was over the top from backup) so right away he says I will get a surgical resident but you are fine. I said in pain all day and unable to sleep. You can tell where this is going..................

So a different resident than sunday comes in and he just touches my stoma thru the bag and says he tube looks good. Then he gets his head resident who says eat, eat. I explain that anything not clear liquid does not go thru. She is nice and does explain that with just clear liquid some gets absorbed so will not just whale out of me, true. And that I can expect some pain and that with all my adhesions things won"t move normally due to bedns and twists (mid oct I had no bends and twists per the retrograde xray) no open surgery since, unless adhesions are going nuts now, and as long as I am not throwing uo yada yada,

Then the nurse comes back with whole different attitude like it does not take a genius to figure out the docs had said something to her....she says "with your attitude"! "You need to move on with your life". I said if this had worked I would be back home and we would not be havuing this cinversation. She said well go home and eat. Auuugh!

When I was there I had not passed anything including gas for 7 hours. Not normal for an ileo. They were like that's ok and I said actually an ileostomy with breaks more than 2 hours in duration is a sign iof trouble. I said I had a working stoma for 4 years. Infact when I was hungry I would have to eat to slow it doiwn. They forget I know hoiw it should be acting.

I cannot help. But think part of the issue may be caused by this doc taking out my colon. I knew there would be trouble ahead as I adhere so easily. Could not prove that caused all this but would have been best had she left my colon alone.

Am burping up ice cream I ate when I got back. Sure glad I did not eat "real food"!

Should I get myself flown to headquarters in Rochester?

I have faxed Cleveland my records, johns hopkins, and washington hospital center, but docs need time to read my stuff. One doc at CC will see me but is away christmas thru all of january . I may have so much scar tissue in me that nobody may be able to save me.

When I kayed on the stoma side in the ER effluent came out as the tube assumed a different pisition in my bowel. If I lay in other poisitions effluent does not come out. There is obviously something going on here.

Bay Area...............thx for the name and that number of the bariatric center of where you went and I dialed it with intent of asking them to connect me with your docs as you listed but the bariatric center number said it was not in service any more. But I will pursue the web site. Thx for thinking of me. I need some adhesion doc and a stoma maker. I was also told of Dr. Cooke in calif but he does not make stomas.

I am working hard to get help by following up on leads from here and thanks. But I am in so much pain. I told ER tylenol was not touching it. I did get a few and I mean FEW sleep pills but I would take a LOT more than one of those to put me out. The other day I got a shot of morphine none today, though today not as bad but you would think something inbetween tylenol and morphine! I am glad I had that morphine the other day as at least I slept that night though could not wait for it to get out of mysystem otherwise.

I do not for a minute believe that this stoma is ever going to work. I know that sounds negative but if they work they work, if they stop they stop. They don't work for a week, stenose, get stented thwn start to work when they remove the tube! Hope I am wrongm scared, unsure, and nowhere to go with this.

Rosemary

Thanks K. Rosemary

     Praying for you too Rosemary.  Sometimes I think when doctors are perplexed at what to do they sluff the patient off, which, seems like it happens a lot in your case.  Looks like you are being tossed around like a ball.

     According to your post, you did well for the first four years.  Do you have any inkling as to what exactly happened that turned into this downhill spiral?  What triggered this?  I never had adhesions (fingers and toes crossed and hope I am not jinxing myself ), but, then, I only had that one operation...total colectomy with end ileo, other than my tonsilectomy at age 5.

Rosemary
I'm so sorry to hear the way you have been treated by the er staff it's just not good enough how would they like to be in your shoes

Maybe it's time to get out of there if they aren't willing to offer any treatment other than the stent tube ?
Must be so worrying for you I'm very thin myself and I hate it but I'm more fortunate than you because I'm able to eat some solids lately , not getting any nutrition and even liquids backing up will start to affect the rest of your health as well no wonder you aren't able to get up in a morning and feel so tired .
I'm sure you have probably thought about moving and go to another emergency room at another hospital could you try this ?
Sounds like you can't just wait around and hope for what would that be a option for you at least another hospital could do blood work and maybe give nutrition , don't know rosemary I'm not much help to you but thinking of you and hoping things improvr for you soon
All the best lucky

Thanks lucky. If this doc had not taken out my colon all could be well today. We will never know. She did what she would do for MOST people and remove and unused colon but on an adhesion former like me and she saw them, she should nt have done this added procedure.

Yes I have feelers out for help at other hospitals. And ER is right next to my hotel here. Nearest one other is in scottsdale and they would just send me back to phoenix so would waste a trip. I think I am going to die of this. Social worker I hired private is going to call for nutrition, and to get the tube placement re-evaluated.

Rosemary i was reading a post on the uoaa forums and someone is talking about a excellent surgeon in Dallas who they trust and is very good maybe you could check it out it's under the heading hernia update
Lucky

Thx lucky. Can you get me the name of the doc in dallas? I have a hard time logging onto that site for some reason.

Thanks UC wife. My friends at home have fallen out of touch as they do not know what to say either. This is horrid.

I am networking all I can but it mauy be too late for me. Any hints or contacta I am following up. Rosemary

Mgh locked me in their psych ward when they could not handle a stricture in my rectum. The doc who did it is still there, but god only knows. I would have beeen better off with her. My stoma tube is blocked. Night crew at the ER said eat real food. So I had a smal yogurt. Blocked right up. I did gat a call back from. A stoma doc from the east coast so will call and make appt int the a.m. Cannoit face that er tonight alone. If I knew how to do it I woulf just take the tube out and rinse water. Thru I t clear it and reinsert it. Called social worker that I private hire to hopefully go with me. Called the resident ahead. Liquid is squeezing by the yogurt this is horrid. Thx. Your doc at mgh is new since I was there with my original scarring in and everything and in need of an ostomy. But. She works with the one who locked me in the psych ward but as you say maybe would have been better. RJ

Thx. Rosemary

Sticking to clears. Residents refusing to check the stoMa tibe that is now only partily working in the totally non working stoma.

Wondering if I should leave here before they pull the tube the 19th and leave me to reobstruct when the stoma closes again.

Oh yeah, MGH locked me in the psych ward for 5 hours because a doc. Refused a rectal stricture dilation back when I got mu rogiginal injury that caused need for stoma. I had prepped and gone RF hours without food. I said do I shoot myself now or di I wait? It was a joke. Never say that. They knew I was not serious. Psych said you need a surgeon not a psych.

Well, MGH is supposed to have one of the top psych wards, and it sounds like they did their job saying you didn't belong there (5 hours is quick turnaround in hospital time, as we all sadly know....). But I have known others who got themselves locked up from joking about suicide when a doctor was there.... it's kind of like joking about bombs when you're at the airport, just a risky place to go... you learned the hard way.

(One of my friends was depressed and said something vaguely suicidal to a primary doc.... the doc asked if she had a way she would do it .... she wasn't thinking, and is a diabetic, so said that it'd be pretty easy to give herself too much insulin, but talked about her kids etc and how she would never, and next thing boom, she's forced into an ambulance, driven to the psych ward etc.... she never went back to that primary doc....and also didn't get any of the physical illness issues she went there for resolved either)

It is very hard to be bouncing around like you are, relying on doctors who don't really know you. No advice, just hope things get better.

God bless you Rosemary, I do not know what to do or say to help you...just know you are in my prayers

Janet

Hang in Rosemary. Good that you have the social worker.

I understand why the doctors would err on the side of putting someone on a psych ward.... if they make a mistake that way, from their perspective, not much harm is done... but if they make a mistake the other way and a person kills him or herself, well, that's pretty huge, and something they'd have to live with forever (not to mention likely getting sued because they were warned)....

Of course, in your case, a lot of harm was done, as that seemed to have put you off all doctors in Boston.... lot of people come from all over the world to get care here.....