Well the catheter bag is only until tomorrow hopefully. But the stoma bag is forever now. When I had my stoma before someone made me a couple of covers but I actually preferred it without. I found the covers just added unnecessary weight and warmth to something I'd prefer to be as cool and light as and unobtrusive as possible...
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The EADD Sickness and Pain Thread ver Pain of the Wrist & Cock
- Thread starter Shambles
- Start date
I really hope that my fast diminishing tolerance of this hellish place is going to coincide with my being discharged tomorrow. It all relies on the reduction of my still very watery stoma output to around 1 litre (been over 2 litres the last 2 days, but I've only started eating properly today, and a fluid only diet is bound to flow through faster).
Would be much easier to manage in my own kitchen with my own food at my own schedule. My sanity would also be managed better with some comfortable furnishings, and peace and quiet at night. I'm sure that there comes a point when you are delaying your recovery rather than aiding it by saying in hospital and I feel I've reached that point now. But of course I'm still at the mercy of the tall man who will sign my discharge summary, and his word is king.
At least I'm finally successfully twoc'd this morning, peeing for myself at last.
Would be much easier to manage in my own kitchen with my own food at my own schedule. My sanity would also be managed better with some comfortable furnishings, and peace and quiet at night. I'm sure that there comes a point when you are delaying your recovery rather than aiding it by saying in hospital and I feel I've reached that point now. But of course I'm still at the mercy of the tall man who will sign my discharge summary, and his word is king.
At least I'm finally successfully twoc'd this morning, peeing for myself at last.
^
Patience Josh! I appreciate it must be driving you potty, but whats a day or 2 more in if it keeps you out of there longer in the longterm?
Sorry for siding with your consultant, certainly don't mean to but I know how important it must be to you to escape this awful system and get started back on your life again. Which is a long life now! So a day or 2 may be worth it.
Patience sweetheart, I have no idea how hard this is for you, but please hang on. And yeh bitch away :D
Patience Josh! I appreciate it must be driving you potty, but whats a day or 2 more in if it keeps you out of there longer in the longterm?
Sorry for siding with your consultant, certainly don't mean to but I know how important it must be to you to escape this awful system and get started back on your life again. Which is a long life now! So a day or 2 may be worth it.
Patience sweetheart, I have no idea how hard this is for you, but please hang on. And yeh bitch away :D
I feel for you Josh mate you must feel that all of this treatment etc is never gonna end. Feel sorry for you having to stay in hospital as that's never a fun experience either much better being at home with all your creature comforts.
I had to go hospital on Monday for an ECG & Echocardiogram followed by an appointment with my cardiologist. I had been convinced that the echocardiogram would show that my ejection fraction rate had improved but unfortunately it's exactly the same as it was last year and now they tell me i've also got a blood clot in/on my left ventricle so they are writing to my Oncologist as they want to put me onto Warfarin.
Of course at the time of them telling me this i couldn't think of any questions and as always it's only a little while later that all the questions come to me. The cardiologist is good though because when ever i have questions i can just email them and they get back to me with the answers asap. So it's time for me to do some research into what this clot may mean for me in the future. Don't really want to go onto Warfarin if i can help it
I had to go hospital on Monday for an ECG & Echocardiogram followed by an appointment with my cardiologist. I had been convinced that the echocardiogram would show that my ejection fraction rate had improved but unfortunately it's exactly the same as it was last year and now they tell me i've also got a blood clot in/on my left ventricle so they are writing to my Oncologist as they want to put me onto Warfarin.
Of course at the time of them telling me this i couldn't think of any questions and as always it's only a little while later that all the questions come to me. The cardiologist is good though because when ever i have questions i can just email them and they get back to me with the answers asap. So it's time for me to do some research into what this clot may mean for me in the future. Don't really want to go onto Warfarin if i can help it
Yeah don't worry, I'm siding with my consultant too and will do what he says. It would be embarrassing to push for home too early and end up back in here a day later!
Anyway, I've calmed down a bit now and am feeling OK again. I've been given a bit more control over my fluid and Loperamide intake and have been to the shop to get foods I know help thicken the output, and I'm starting to see results. Unless something goes awry during the night it's discharge day tomorrow for sure.
I'm also sure I'll get some sleep tonight regardless of what happens because I'm now so tired I can't actually read text on my phone with both eyes open, it's so cross eyed! I must look like a right idiot typing this with one eye open.
Anyway, I've calmed down a bit now and am feeling OK again. I've been given a bit more control over my fluid and Loperamide intake and have been to the shop to get foods I know help thicken the output, and I'm starting to see results. Unless something goes awry during the night it's discharge day tomorrow for sure.
I'm also sure I'll get some sleep tonight regardless of what happens because I'm now so tired I can't actually read text on my phone with both eyes open, it's so cross eyed! I must look like a right idiot typing this with one eye open.
Glad to hear you're a bit calmer honey. Get some sleep and let us know how it goes tomorrow xxx
Eveleivibe
Ex-Bluelighter
Have been in Lurksville n so been follow. Wishing you a speedy recovery, Josh.
Evey
Evey
Sprout
Bluelight Crew
So glad to hear you are nearing discharge! On the up now! 
@ maxalfie what is the exact name of the heart condition you suffer from? Is it a side effect of the chemo or am i remembering things wrong?
@josh take care man, trust me doctors dont wqnt you in the hospital any longer than they feel there is need either... recovery is slow after big surgeries so dont push yourself too hard
@josh take care man, trust me doctors dont wqnt you in the hospital any longer than they feel there is need either... recovery is slow after big surgeries so dont push yourself too hard
5StarSquatHotel
Bluelighter
My healthy living has gone into over drive. 6 green portions of veg in juice in the morning and I have adopted a flexitarian diet, No E numbers or additives (or the like). Doing weights every day where my benzo fucked body will allow and I am pushing the routine as far as my body will allow. Spirulina and Chorella supplements every day as well. The next year is critical, I will be either vastly better or a lot worse or even pop it (Docs words). At least I can say I tried. Wish all this was having more of a noticeable effect on my mental health though...
I'm home! Can't stop crying. Only usually cry when I'm happy so I assume that's a good thing.
Thanks for all the support on here guys. You might not see me for a while now because I'm going to bed and will probably sleep for about a week now!
Thanks for all the support on here guys.
You might not see me for a while now because I'm going to bed and will probably sleep for about a week now!
Eveleivibe
Ex-Bluelighter
Hugs xxxx
Not sure what else to say. Here if you ever need someone to talk to.
Evey
Not sure what else to say. Here if you ever need someone to talk to.
Evey
kingme said:
Yes it was as a result of having chemo and the full name is Chemotherapy induced dilated cardiomyopathy. Had a copy of the letter today that the cardiologist sends to my Gp which has loads of stuff on it that wasn't mentioned to me and at the moment i have no idea what it means until i either google it or email the hospital to find out.
The letter states my ejection fraction is 25-28%(i understand this) but i don't understand that my LVIDD is 6.2cms with severe global hypokinesis of my LV. Suspicion of laminar thrombus in left ventricle(blood clot) and that the ECG showed sinus rhythm with left bundle branch block.
If anybody understands what that means i'd appreciate an explanation if possible. It doesn't seem to be affecting me much so far apart from getting tired and breathless and that's about it so far.
@maxalfie lvidd refers to the diameter of the ventricle at diastole (while the heart muscle rests). Hypokinesis means less owerful contractions of the ventricle. Together with the ejection fraction they show that your heart is ... not great at pumping blood. It's a sort of cardiac insufficiency. Your heart is thus prone to have clots forming, a process that happens when blood doest flow optimally. Clots are dangerous because they can embolize, meaning break away and clog arteries downstream. The left ventricle pumps blood to all organs so clots there pyt one at risk of thromboembolism... not good.
clots are not all formed equally friable. Some are fixed to the heartvwall and tough so less dangerous. However the risk remains. Medication may completely resolve the clot.
Id have had you on anticoagulants right away.
The ecg is not telling you anything new. Left bundle branch block may be the cause of the hypokinesis but may also be just an artefact of the other problems....
Was i clear enough?
clots are not all formed equally friable. Some are fixed to the heartvwall and tough so less dangerous. However the risk remains. Medication may completely resolve the clot.
Id have had you on anticoagulants right away.
The ecg is not telling you anything new. Left bundle branch block may be the cause of the hypokinesis but may also be just an artefact of the other problems....
Was i clear enough?
Sprout
Bluelight Crew
I'm home! Can't stop crying. Only usually cry when I'm happy so I assume that's a good thing.
Thanks for all the support on here guys.
Enjoy your rest, you've certainly earned it!
BigG
Ex-Bluelighter
How you feeling Josh?.....
Been thinking about you op while I was away....wondering how you were getting on. At least its all over now mate and you back home ❤❤❤
Been thinking about you op while I was away....wondering how you were getting on. At least its all over now mate and you back home ❤❤❤
Yeah been home 2 nights now, but not without complications. Yesterday lunch time my bowel seemed to go back into a slight ileus, stoma output gone back very watery and biley, massive abdo pains etc. Was a toss-up whether I went back to hospital or not but I figure they'd just put me on a drip to hydrate me and wait for things to get moving again, and since I'm not being sick I can do that here, just drinking load of doiralyte and eating Walker's Crisps, which seem to be my miracle food with this and previous stomas (stomae?). Feel a bit better this morning, had some toast and there is a bit of substance in the output, still feeling very sore though. Must remember I had a 4 hour surgery in which organs were removed only 10 days ago and not get ahead of myself.
The other little issue is that my midline is opening up, just ever so slightly, about 2mm wide by 5mm long, but typically right by the stoma where the flange of the bag would normally cover it (the glue probably got pulled by an earlier bag). Started bleeding under the bag so I've put a new bag on and doctored it slightly so it's not covered, and have used a bit of durafiber and a small cosmopor (I have all the kit here from past surgeries heh) to cover it for now. It's so tiny but I can't stop it bleeding, it's in just the spot that gets pulled about whenever I move. Will get it looked at tomorrow but I dunno if it needs a stitch or not, usually these things need to be left open so nothing collects under the skin, so packing and dressing might be the best thing for it.
It's the most annoying thing really, because a good smooth belly makes all the difference when you have a stoma, bags stay on and don't leak. I was so chuffed with my scar this time, looks like it was gonna heal away to nothing, compared with the last one which was a big wide ugly mess which was hard to get bags to stick to. But now it's opening up in the one spot I'd really like it to be most smooth!
Ah well, I'm alive and in my own bed at least
The other little issue is that my midline is opening up, just ever so slightly, about 2mm wide by 5mm long, but typically right by the stoma where the flange of the bag would normally cover it (the glue probably got pulled by an earlier bag). Started bleeding under the bag so I've put a new bag on and doctored it slightly so it's not covered, and have used a bit of durafiber and a small cosmopor (I have all the kit here from past surgeries heh) to cover it for now. It's so tiny but I can't stop it bleeding, it's in just the spot that gets pulled about whenever I move. Will get it looked at tomorrow but I dunno if it needs a stitch or not, usually these things need to be left open so nothing collects under the skin, so packing and dressing might be the best thing for it.
It's the most annoying thing really, because a good smooth belly makes all the difference when you have a stoma, bags stay on and don't leak. I was so chuffed with my scar this time, looks like it was gonna heal away to nothing, compared with the last one which was a big wide ugly mess which was hard to get bags to stick to. But now it's opening up in the one spot I'd really like it to be most smooth!
Ah well, I'm alive and in my own bed at least
BigG
Ex-Bluelighter
Sounds like you've had a bit of an ordeal to put it mildly!!
Don't overdo it mate...just take I easy and get well soon ��
Don't overdo it mate...just take I easy and get well soon ��
Excellent explanation Kingme,thankyou mate. Now i understand what it all means. Why they couldn't just tell me that while i was there i don't know. They do want to put me onto Warfarin but im not sure how thats going to work as they have real trouble getting blood from me for blood tests as my veins are screwed from years of iv drug use. I'd much prefer to go back to using Fragmin so i can just inject it myself each day.
Thanks again for the explanation it's a real help to me