I have a date for surgery

NCOT, I hope that was gas pain and it has subsided now! I second the suggestion for mint or ginger tea and anything to stimulate that bowel to move the gas/output along. Hope you have had a better day than your night.

Dang! So sorry it hasn’t been as smooth as we all wished for you. I agree with you on the morphine. It made me so sick last time I had it I vomited and dry heaved for hours. Never again!

That is a shame they’re making you suffer so soon after a major surgery. Bad on them!

Hope you can get them to give you better pain relief. Any idea why the hemoglobin is so low?

I am glad you were able to walk around a little. I know that was driving you bonkers.

NCOT — checking in to see how you’re doing! Hoping the fever is gone and pain is better! 🤞🤞🤞

NCOT,

I hope you are feeling better... And that everything is going smoothly.

Please let us know how you are feeling when you are able.

Clo

Hello folks.

Dreadful few days. This is the first day I've felt well enough to update.

Hard to describe. Just endless dogsick nausea alomgside searing 10/10 pain attacks lasting for hours. In between, I would desperately chase up antisickness and pain meds. Yesterday was the worst day and culminated in me breaking down completely and bawling my eyes out for two hours straight. It was a real existential crisis of the soul, not something I'll forget easily. Afterwards I found I was a little more able to think straight and put my Crohn's knowledge to use.

Decided that if the oxycodone wasn't working, it was because it was targeting the wrong thing: small bowel obstruction. This was probably not technically a small bowel obstruction but it was also probably similar enough that basically the oxycodone wouldn't touch it. I know from long past experience no pain meds really work for those ghastly things, not even opiates. In fact opiates can make things worse by slowing the bowel down and keeping the food/liquids sloshing around inside, building up.

So I had to prioritise getting the stoma up and running over pain relief. I did not turn down pain relief, I just took it at the designated times only instead of seeking top ups.

That meant eating breakfast even though I had FA appetite. Seriously. Took me two hours to eat a slice of toast with marmite today. But the slowness and thorough chewing gave the stoma a chance to accept the food - something I knew by loud and painful gurgles that had previously been missing.

I'm not out of the woods yet. Got probably weeks more of this but the first week is bound to be the first, followed by the second week etc. I will get off the oxycodone the millisecond I am able (got prior history with that one - chronicled somewhere deep within my 11,000 posts, ****).

So yeah. My wounds are healing nicely. My closed rectum is astonishingly pain free - so, the opposite of a pain up the arse >_>. The only drag there - literally - is the drain bottle attached to my right buttock that I inadvertently drag along behind me when I forget it's there and don't pick it up. The blasted thing is always falling down, stopping working, etc. Basically there is a large cavity where my rectum was, filled with blood and fluids from surgery, and this bottle is designed to suck them out. That's the last of the many things attached to me.

Am in a bay with 5 other people. Honestly, this is the part of hospital I sometimes really like. There's just such a wide variety of people which come in, and it's interesting getting small snippets into other people's lives. Including the obviously unhappily married couple, where the husband kept on whining to the wife over the phone about when she was going to be let out. Then when he finally arrived you could cut the atmosphere between them with a knife, ****. (I liked the woman though, so I wish her well).

I also finally made my acquaintance with the other old timer today - I've only been here 5 days but I've seen so many people come and go in that time, holy crap. She is the only other person who has been here as long as I have. She is absolutely lovely but I do hope she recovers. She had surgery for a tumour in the lower bowel and she's struggling. Funnily enough, she asked for a stoma - thought it would give her more control over her bowels - but her doctors talked her into a resection. Now she is currently incontinent and scared. She's an old lady; I just hope she recovers all right.

The nurses have been lovely too. Genuinely impressed with what they do under great stress. Might even write them a thank you letter when I'm out of here. Not the sort of thing I'd normally do but these aren't normal times and I feel like hospitals need to be boosted as much as they can. Nothing will make up for more pay or more staff of course, but I can't supply that :/

Okay I'm off to order a Wedge pillow while I have the strength... >_>

PS: I might be being discharged tomorrow but no idea yet.

PPS: Seriously, that acronym is a banned word? It's so mild. It's just another word for lol, that's all.

PPPS: I forgot to mention the most successful part of my hospital stay. My Snoopy slippers! :D They are legit about 30 years but wash up a treat. Several people have said how much they like them. Too tired to do it now but will post a picture of them soon!

Whew! Was getting worried! Glad you’re feeling somewhat better but sorry you’ve had such rough days. Thank you for updating us! I know it’s hard to “hear” tone in a written post but you do sound much more upbeat so hoping you continue to improve!

Oh wow NCOT, glad it's over and glad you got that stoma moving!. Thanks for your sense of humour amid all that pain! I can visualize it now, ouch that hurts! Hopefully you will get to enjoy your new butt real soon. I'm also glad you're having a somewhat pleasant experience with your care, in spite of staff shortages, I have to commend them, and I commend you as well for having the courage and the Will to keep on fighting. Once you are on a full diet for a few days, everything will be moving along better and hopefully you'll have less pain as a result? Wishing you a real speedy recovery?

Well guys, after a totally rubbish day I've had an upgrade, ahahaha.

I've been transferred to the private wing of my NHS hospital, and now I have my own room, toilet and shower, TV, bland scenic picture on the wall, soft wall lighting, etc. Basically, what happened was this: six patients were due to come up to bay D (my bay) from A&E (Accident & Emergency) and they needed to clear all the beds. One bed was empty, two patients were discharged earlier, one woman was sent to a sideroom; us remaining two went to the private wing. Because we'd recently had major surgery we were considered vulnerable and they didn't want us mingling with the A&E crew, who could have Covid and whatever.

So that's why I've had a free upgrade to a private hospital, ahaha. Not sure what I make of it yet. It's eerily quiet, which right now I like, but which I could see getting boring quite quickly. A nurse made me a cup of tea as soon as I arrived. Have had new stockings made, as I lost my old ones. A nurse persuaded me to try the blood thinner injection in a different place, and it was actually less painful. But that said, I've had some excellent personal care from NHS nurses too, so it's hard to make a direct comparison. The acid test will be when I ring the buzzer for anything, but especially a pain medication top up. I nearly lost my mind this evening trying to chase up an oxy top up, which by this point I really did need: I could barely stand or sit. I got it eventually , key word being eventually. Love the NHS but that's one area they are just not good on.

Still a tad hyper tbh. Anyway, I did feel really rotten earlier. Pains are developing in new places every day, particularly in my behind. I cannot get over how that was pain free for days and decides now it's in excruciating pain every time I move 1mm to the right or something. Apparently that's normal and I will get over it.

Before I leave the hospital I want to go and say goodbye to the old timer, who was sent to a sideroom. The cynical side of me wonders if the private wing rejected her for being too sick. On the other hand, I do think she is better off staying in the same ward, where she knows all the nurses and doctors. She'd absolutely hate this silence: she just wanted people around her, bless her.

Anyway, thank you everyone for your posts. They are appreciated.

@Clo - Your comment about marmite made me laugh. I don't hate it but I don't love it. I personally prefer Bovril, a superior beef extract paste. But you'll never get that on the NHS. Anyway I am mainly eating marmite for its high salt content: it can be hard packing salt into a bland diet sometimes.

I've had my entire rectum removed and sewn up. And glad to be done with the thing, but it's not quite yet done with me. I have no idea how long I have to carry this drain bottle around for: it surely can't be much longer, but I thought that 3 days ago. The doctor was rather vague when I asked her about it this morning.

I'm doing quite well on the oxy now. Nausea has almost gone.

PS: I can hear noise now. An obnoxiously loud TV. How loud do people need their TVs, for crying out loud? That said I've got ear plugs and haven't closed the door yet, so I don't think it will be a problem.

@dorri - Nice to see you on the UC board over from the Crohn's board. Welcome aboard

@straydog - Agreed about the good nurses making a difference during bad times.

Okay, time for a bit of TV watching, folks! (At a reasonable volume of course.)

Edit: My mind still can't process what's happened: it's like going from total chaos to total order - or something. I did actually have a genuine reason to use the buzzer, as I had a dumb accident in the bathroom. I didn't do up the bag properly and some of the contents got onto my gown and stockings. I was pretty annoyed with myself, as that's not happened before and I know I tried to do the bag up but just must have skipped over the final part of making sure the adhesive tab was stuck.

So yeah, not my finest moment but a nurse was there instantly. And I got an oxy top up in 5 minutes - no chasing up required. This isn't hospital treatment as I know it!

Anyway, am watching a film but can't enjoy it 'cos I don't want to annoy people with the volume but I cannot hear half of it unless I turn it right up. And I'm not gonna do that this late. Time to turn in for the night, I think.

I like having a private room, much better than having to share with someone. My experience with what we call a semi-private room (2 patients to one room) wasn't the best. The family members would come in, the room wasn't big enough to accommodate them so they ended up in my space, lol. Most of their conversations I really didn't need to hear. Now, the newer hospitals all have small private rooms which I like much better.

Hopefully you will be allowed up more to move around real soon. I don't do well being confined to a bed, granted I am much older than you. For us older folks it takes a lot out of us not being able to get up & walk around even in the room.

Here to each day getting better & better for you!

Oct - stupid predictive text - meant Oxy

Delta_hippo said...
Decent cup of tea, nice nurses and a private room upgrade? Are you sure this isn’t the Oct talking? 🤣🤣🤣 seriously, I want to move to your hospital catchment area. Last time I was in hospital - blue lighted in as I was vomiting blood- I was on a trolley in a corridor until 5am. You go girl!!

Ahaha, you posted literally a few minutes before I did, so I didn't see this until now.

Believe me, nothing like that has happened before and I don't suppose will again! But if you want to try your chances, I'm at Luton and Dunstable hospital lol.