Where is Rosemary?

Hi Chronie,

I am here. Back home from the ER yet again! So today I woke up and was soooooo weak from eating only my clear liquid diet yesterday. I was just so reluctant to get up when a friend called me. I told her how due to my stoma narrowing I had to basically live on clear liquids. SHe said go to your local ER tell them what is up and that you are getting no help. I called the ER triage nurse told her the issue and she said COME RIGHT UP THIS IS NOT NORMAL OR SAFE! I told the ER doc the whole story And this had been going on since March 11 with no help forthcoming from my current surgeon. ER doc was horrified! I told him how I had the food blockages at the stoma in mid march then an actual sbo over easter weekend and that my current surgeon was fluffing it off as functional and not even looking at my stoma. The GI was all good and looked at my stoma but is not a surgeon. Then that my PCP just said "Good luck" when I told her of all my quests for help.

He was like WAIT A MINUTE! It is the surgeon's job to deal with this and the PCP's job to line up consults for me if no help is forthcoming. He placed a call to PCP and told me to call her Monday and I should be getting some help from her. THEN her job is to move up the new surgical consult from late May to MUCH sooner. He was beside himself on my behalf, so was the ER nurse. So it was good that I went up. My goal was to scrounge up advocacy no matter how I had to do it. Glad my friend suggested I go.

He did do a shallow check of my stoma with greased pinky. He did not go in very far as this is not his specialty. He went in a little way then stopped and let the stoma dilate away from his finger, then he went in a bit further and said it dilated away from his finger. He did not go all the way to the muscle level. My stoma was quite sensitive and he said normally it is not as no nerve endings, but I think being swollen may have something to do with that. I did notice that more gas came out of the stoma after he did this finger check. The resident at Easter time put his finger in all the way right away, he did not go slowly and allow the stoma to dilate away from his finger. I think this local ER doc knew more than the resident did at the big hospital.

ER doc called a local surgeon and asked a lot of questions about stoma's. He said that the surgeon said it would be unusual to have actual scar tissue form in back of the stoma this far out as all was good for 4 years. NOT sure how true this is, but that is what he was told. He did say that abdominal wall tightness can cause an issue and to just as an experiment try to be aware if I tighten my abs subconsciously. Not saying I created this issue as he said obviously there is an issue to begin with. but I will be more aware and try not to make it worse. He did not know what the narrowing reason was but made all his best efforts to get me some help.

So it was a nice day out today and I spent most of it in the ER, BUT it was very productive and if my PCP now helps out, this will take a LOT of stress off me. This ER doc was fabulous. I cannot help but think if he had ever been my PCP he would have analyzed the whole case and I would never have had the sigmoid resection (discovered unneeded after the fact) that then went bad and lead to my needing a stoma in the first place. He was very analytical and very pro-patient. And he spent a lot of time listening to specific symptoms. I could see the wheels turning in his head. I could tell he felt horrid for me. He wished me luck and said for now just keep on with those liquids.

SO after I got out of there, I was sooooo hungry and thirsty. I went for a hot fudge sundae and a walk in my favorite park. And then had a protein shake. Gotta have some treats.

Yesterday I had a severe peri-umbilical pain such as the type you get when you go into a full blown sbo. It came after swallowing ONE BITE of poached egg on toast well chewed. So needless to say I spent the rest of the day on liquids and luckily pain stopped and I was OK. I was like "Noooooo".

THanks for thinking of me. I do want to eat a bit of solid at some point because I don't want my guts to get out of the habit of "chewing" but on the other hand...... Rosemary

Chronie,

I feel like I am going to be left to die yet again. I thought after my 13 month battle to get my life saved with the adhesion lysis and the needed ileostomy after the sigmoid resection gyn procedure, that fighting for my life was done as I proved it that I was seriously in physical trouble.

NOW I am having to do this all over again. All I want to do is sleep. I am so discouraged. BUT I emailed my PCP all the tel numbers of the second opinion docs that I need to see. Then some other ideas. I really hope she gets rolling from the ER docs message. Sometimes doc to doc they do respond.

WHY should it be this way? Stomal stenosis people can die of. If I was a doc I would not dare not respond to someone's plea for help. I would do what I could to get the person help and document it. I would not just leave written record on the internet saying "good luck with this" when a patient emailed in their serious condition.

WHEW! All new days and new ways. Is nobody responsible for ANYTHING in the medical world?

Thx for thinking of me you were right as to my whereabouts. Rosemary