I AM SCARED!

OK, so yesterday I had yogurt, lots of liquid, scrambled egg, and some ice cream. OUTPUT like practically none! Spent all day at dentist as my lack of nutrition is damaging my teeth.

So today I wake up and have only a bit of brown water in my bag. I called the big med center out west that I am taking medivac flight to on sept. 9 for eval on 11th and surgery for stoma revision and take down of adhesions sept 14th. They could have seen me this monday for the eval, but due to the docs vacation after labor day and there being NO O.R. time for her to do my surgery prior to the 14th they did not think it wise that I be out there all that time at a hotel. AND I have to agree BUT..........

There is simply NOBODY around where I live in Mass that gets the whole adhesion behind the stoma and stoma being crooked thing. I did contact a doc in CT that I have seen and was offered to see the stoma nurse. THAT doc is on vacation. He had said the first time he saw the new stoma, "Let me know end of 3 months how long you want to keep that stoma?" SO he knew by the pics and having seen the stoma that something was wrong. It is now very tiny. The active part size of a dime with a tiny little opening in it that has now migrated onto the side.

Original revision surgeon in NYC offered come to the ER or make appt, and we can see if revision. BUT I don't want him redoing it as this one did not turn out well. Head CR surgeon at that hospital put a q tip into the opening and proclaimed it open. q tip not that big and opening. Other hospital in NYC where the resident accidentally put two splits in my stoma doing a finger exam (though gently) that surgeon just said not to think so much about my stoma. Well, gee, I would be off cruising by now if the stoma worked!!!!!!!!

So that leaves me with a 2 and a half week wait. Today I just drank clear liquid protein drinks all day. On that I filled bag after bag of liquid. Tomorrow maybe I will try a BIT of yogurt and cereal in the morning and then later in the day go all liquid. I mean it puts out if I keep all liquid, but very irradically. I am sure stenosis, other wise I would be able to eat somewhat normally as I could in June when this was new.

I am praying that I make it until sept 9 medevac flight out west. I asked if I just went to their ER could I get help and they said that this doc who has the whole adhesion issue figured out is the head CR surgeon so is almost never on-call. Now I have some pain over the stoma that is not post op pain. BTW those post op pains FINALLY ended. SO the pain around the whole stoma I guess was just Post op pain.

I really wonder if the finger dilation by the resident at the other hospital and subsequent scarring from that really pushed things over the edge. The original doc was gone at that time and had not been taking my issues seriously and I had been in constant touch. So its not like I didn't tell him..

This stoma is litterally spitting out water at this point. Seems like I need a bit of something in there maybe some rice crispies and milk one would think that would not cause a major issue. I am just so tired, and so scared, and so alone with this. Many of my friends are off but some are sticking by. If this does not get resolved to a livable degree, I honestly do no know what I will do. I was blessed with the 4 good years til the old stoma stenosed, but I fear very much for my future. I am only 56 and otherwise healthy and may die of this. They have cures for diseases, I have none, and may succumb. I have no clue what to do. Just need to rant. Rosemary

No answers either but a whole lot of sympathy, prayers and hugs for you Rosemary. (Sigh)

Thanks all for the rant sounding board!

Just had rice crispies and yogurt. Let's all pray! Rest of day I am on liquids!

Christine, your doc wrote a nice letter back and said he no longer is doing big complex pelvic surgeries. He returned the check I enclosed as a payment for taking the time to read my letter. Then he sent quite a long list of docs in my area that he said should be able to help me. On it were: a doc who did not believe my rectum was scarred in by the original pelvic prolapse surgery, the doc whose resident put a crack in my new stoma, and the doc who put the silver nitrate on the collapsed part of my revised stoma who insisted that it was granuloma tissue when in fact it really was part of the stoma that had collapsed or retracted to the skin level then put a qtip into my stoma opening and said it was open (at least the diameter of a qtip that is). So your doc's heart in right place but
The knowledge base simply is not there of the docs I've seen on his list. Oh also was the name of the doc where I had been going who did not recognize my severe stom stenosis in the first place.

RJ

Maybe the doc he referred you to was a friend. Maybe golf buddies trying to get business for eachother. Thanks christine. Friend going with me to the west had to cnacl due to her getting lyme disease jeeeze! So gotta find another travel person. The stress! Had yogurt and now out for chocolate soft serve a semi liquid fiesta. Hope I do ok. Yeaterday on total liquid so much ran thru me I was like dehydrartion. Here's hoping my venture west works out. Rosemary

No advice, just saying "I'm thinking of you" - prayers and hugs from me as well!

Thinking of you Rosemary. Hope u find another travel buddy and that you can go and get it sorted out!! Will be holding thumbs!! Xxx

Hi, glad u found someone to travel with u!! Is yoghurt generally a problem or does it only affect some people that way? Or do u have intolerance to dairy products? Just want to know if its something I should introduce gradually?
LL

Rosemary, so sorry you are in such bad shape.

If it looks like you are losing too much weight or have other symptoms that require it, is there any chance you could get any doctor to order you a PICC line and TPN? (Total Parenteral Nutrition) You can go home with the line. The line can be kept in for months and the 2L bag of nutrition only needs to be changed once a day. A visiting nurse could do that, although if it is allowed you could do it yourself. There are usually 2 lines in one, so blood can be drawn, also meds can be given.

Right after my ostomy I had a blockage and needed this treatment. I was losing too much weight because I was NPO for almost the whole month I was in the hospital. My hair had stopped growing (I didn't mind not having to shave legs) and started growing again as soon as I got the IV feeding.

Alcie,

Some good ideas but I cannot have any lines in any arms as I have collapsed veins in my left and old nerve injury in my right. I am going to write to the vascular doc tomorrow and see what he suggests. They have triple lumen catheters that are put in the inferior juggular vein and chest ports. I don't know if they can do nutrition through those ports but we shall see. SO FAR I can pass protein shakes, but.....not much energy. I HAVE To stay healthy so I can get this needed surgery done. This waiting is sooo hard.

Thanks for prayers, ideas, suggestions. Just scared. Today I ate a bit of egg. May take some grape juice to get this totally broken down. I also had some chocolate. Not such a great idea, but what are you gonna do? RJ

I hope you can get some help!
Yogurt slows me up too, makes it all gunky!

Thanks. Am fighting with time here. HAVE to stay well and get to Phoenix. I likely SHOULD have taken the med air flight today and gotten the eval tomorrow with the doc out there, but they said with the OR schedule and her vacation they still could not do anything for me until Sept 14th. I also have to have a chest port put in due to my collapsed veins. SO lots to think about. I just have to last as I think she is my last hope. Rosemary

Hi diet, your suggestion makes total sense but due to some unbelievable issues I cannot go there. Click on my esoR name and get my email address. I will be glad to fill you in. Rosemary

Thanks Lolly. I have to get with that broth tomorrow. I have GOT to get through this. I am sooo weak. RJ