STOMA 4 CLOSING UP ROSEMARY

rosemary I am so sorry to hear this. But it seems like you have a good caring doctor on your case. Please speak to her on Monday. It seems like she understands your situation and want to help you. hang in there.

Hi Rosemary,

I haven't logged on in quite some time and am so sorry to hear that you are still battling!!! It's really not fair for you to suffer like this. Will be holding thumbs and praying that when you see her next week that she can finally do something to help you.
xxx

Lucky, sorry i keep getting you mixed up with lolly louise. how many prior surgeries have you had?

yeah I am on that turning the clock back thing big time. what threw me into all these small bowel stoma issues was an unneeded pelvic floor repair that on review of the original misread scan was not needed and was done anyway for dollars. i never thought to have the scan reread by other radiologists.

anyway, i am on the same train you are. you must feel awful with that stuck contrast jeeze. I felt bad enough with stuck grape juice. How can grape juice get stuck? I am asking this current stoma surgeon for a plain xray of me standing and lying down to see if i have dilated bowel loops the grape juice and if I dar eat real food hides out in.

I also want very much to inquire about the legalized physician assisted suicide that is legal in montana, oregon, and washington states. I am still up for the battle and for all i know in time this stoma could be OK. BUT normally if a stoma is going to work it keeps working more than 6 days out of surgery. jeeze. the hole on the side i can handle if the thing worked.

Is a peg tube a feeding tube do you know? I gotta get some nutrition some how I cannot live on grape juice alone I had protein shakes and yogurt today. who knows if they are still in me or not.

if i am terminal due to all this scar tissue and stomas that are going to keep going down and sooner each time and have no access to nutrition then i will die but it will be a slow death. i have a lot to live for but i need nutrition to do it. also even if on parental nutrition, ones stoma must be at least open to let out air and digestive juices. SO FAR this one is not totally closed, but the sept stoma actually virtually closed 2 weeks out from its creation I just could last another 1 and a half months then it got emergent and that was last weeks surgery.

consulting another place and seeing how that is going to go. But if terminal and no energy to do anything plus pain then that is not really living. I am where you are. I believe in legalzed euthanasia for those who are terminal. i still have fight in me and i think you do in you too, but humans have their limits.

i am going to also ask if this stoma totally closes can they put in a drainage tube and give me parental nutrition until i can get stronger to tolerate another surgery IF that stoma would not stenose in. and who knows?

so you are not alone, take comfort in that. I now have to take a pill to sleep at night but I do not even care. Sleep restores and we all have a right to a good night of sleep. Check in with you tomorrow. It just killed me to see people eating a nice turkey dinner as i swilled my grape juice and got up my courage to have a soft serve frozen yogurt. Rosemary

lucky

i heard after i had the sept revision that there is supposed to be an 6 month heal time between surgeries to let the inflammation go down and for the new adhesions to soften. I only had 3 and a half months since my early June emergency stoma reivision and the mid sept revision (the sept revision COULD have waited a bit longer tho things were getting bad, but I could pass a lot more than i can now).

I am really wondering if this is the reason the tip of the sept stoma stenosed, not enough time had gone by. Course then with the November emergency revision only 2 months had gone by. this one could not have waited one more day.

i am doing primarily liquids with some very liquidy yogurt. tonight i had 4 tiny vanilla cookies chewed really well. I don't konw how i was successfully eating egg, thick yogurt, and toast in the hospital this past saturday with successful output the day they let me go. unless i was so full of IV fluid that it pushed things along. i mean who drinks the equivalent of 3 bags of IV fluid every 24 hours or so?

My surgeon is great, but the fact that in 21 years of colorectal surgery she had not heard of the tip of a stoma stenosing is OK certainly as mine is not the normal case by any means, but I would like her to do some networking among colleagues to see if she can find out what is causing this. I need so much more time to heal GOD FORBID in case I need another surgery. I am wondering if they can just get the crap out of someone with an ng tube, then put a drain into the stoma and have the stuff drain out until the person is systemically able for another surgery if needed. I think we are in identical trouble.

i already sent my stuff off to this other place but i put is as confidential consult to myself and them so they had best not call her. If they do, I will simply say that I completely realize that my case is not the norm by any stretch and that it would be fine with me if a committee of docs collaborated to help me and that was my only intent as i am simply hungry.

So far so good on me passing liquid, and IF i awake on my back, the bag is full of air so so far anyway i am not as bad off as you. your doc is right technically to wait more months, but how can you live in that pain?

your digestive juices and gas need to come out or you will get backed up bacteria or risk a small bowel rupture from the built up gas. we have gas in us that we are not even aware of. i was in your state last week when she did the needed emergency surgery. she could see that i was not going to make it tho mine was totally closed. you say yours is partial.

ask your doc if they can put in a cathter into your stoma to draw off the gas and fluid. i think they could do something like this. I would hope.

So uncanny there would be two of us. like this. Good luck. keep me posted. Rosemary

Sorry about the last post my Internet crashed and couldn't get on line for some hours .
Yes this is awful hard to live withe rj but really what choice do we have, the gas is awful just sloshes back and forth around my abdomen lots of bloating and pain it does come out but never seems to go away and same as you I am starving would love a nice roast dinner or a juicy hamburger anything don't know how we are suppoesef to keep u
The calories up and gain weight when can't eat anything solid ?
Going to visit the dietician again this week and see what she suggests I'm so weak and hungry its no good I don't think I'll get through 4 months something has to change but what ?
Do you think the skill of the surgeon comes in to the adhesion problems and stoma closing ?
Rosemary we have a lot in common and like you I love the water boats cruising anything I find it so peaceful and calming on the ocean how I would like to be out on the boat now I think it would restore the soul ( dream on )
Lucky lass

Rosemary, would a PICC line help?

my veins are all collapsed so each time i have to have a surgery i have to have a PICC line. central line into vein in upper arm that they drop into a vein that goes into the heart. it's all good as they can put in meds, draw blood from it, all without being stuck. but i have had two in the past two months. they need heal time. they remove them when you leave the hospital. they are not for TPN nutrition to my knowledge. Did you mean TPN? Am not sure how they do that to be honest. Just finished three popcicles. yum nutrition. NOT.

Shy Ann so how does your ileostomy stoma work? is it OK? and have you been OK since you got it at 18? so too bad you were so young and had all these issues. hope you have been well. Rosemary

My stoma seems to work fine, is it normal for people to have to have it redone? I always thought that the stoma lasted your whole life..

I wish you were feeling better rosemary, it saddens me to hear about all your struggles, I've been praying for you!