Stoma and constipation

[EmNetta]

Does anyone have suggestions, apart from Movicol? Been hot and cold with sore tum and generally feeling ill, next GP appointment's Monday, if I'm well enough to go. Any ideas to help now please?

Thanks guys. I'm actually only 40, so pretty young to have bowel cancer. I've posted on the Tamoxigang thread and am very grateful for your replies.
Wishing you all improved health and vitality x

No problem :) another young bowel cancer person here. I haven't met anyone in real life near my age, but there have been a couple of others on the Tamoxigang thread. They are a similar age to you I think, none are around at the moment though :)

I am only 36 so young too. Just thought I would give an update.
Surgery did NOT go well and I am afraid I got a bit teary today.
I was in theatre 5-6 hours and the 'hernia' was a massively prolapsed bowel. I have known the surgeon a long time and he looked quite upset. I really thought this would be my relief from pain but he discovered a massive mucus fistula by my stoma and I have numerous adhesions. My outreach nurse and surgeon came back in to talk to me today on their days off.
I now have a terrible infection, a drain in as bleeding heavily and feel rotten. Still on oxygen for the pain as resps are low.
Will come back on and chat tomorrow.

Wanna - I'm sorry you are feeling so poorly. I had a bowel resection 18months ago and I felt pretty grim for some time afterwards, but you will start to feel better.

It's my sixth in five years I have had a complete colectomy (last Easter) and this was a mesh of the para stomal hernia (that was never scanned)
Well I didn't get it meshed as the area is in such a bad way and I have more fistulas :(

It's good to hear from you, wannabe, but so sorry about the surgery. You must indeed be feeling rotten. It was good of the surgeon and nurse to come in today, and at least you know exactly what the problems are. It is possible that the "hernia" would not have shown up if it had been scanned. (I had about 20 years of scans and examinations etc, without a diagnosis until having surgery for cancer). It must be very disappointing, but hopefully they can now lessen the pain.

wannabe I'm really sorry the surgery was unsuccessful and turned up more problems. I hope that the infection and pain start to improve and they are able to come up with a good plan for the other problems I'm not surprised you were teary, you were expecting to wake up all fixed, not with more problems than you knew about before! :(

Really hope you're starting to feel better today, and sending you good wishes, along with the others here.

Hi. It's not unsuccessful as such just more intense and thus I feel like I have been hit by a truck. I am sure I will get there.

I'm sure you'll make it too, and you'll probably remember from previous surgery that this is the worst part and the pain gets less with time. Hope the surgeon's pleased with what he managed to accomplish, and the boys will no doubt be relieved that you've come through. It must have been particularly worrying for the youngest, and I think you've done well to be able to post here so soon.

Yes boys are all pleased and have been in. Surgeon went away today :/ on holiday so handed over to another surgeon as drain is still in, not yet working and is a bit 'grotty'.

Thanks for all your nice messages :)

Another day tomorrow. Hope you manage a good restorative sleep and feel more yourself in the morning, with drain working well, etc. Goodnight (and to fellow-posters).

Hope today was better for you, wannabe, and that you're beginning to feel more comfortable. Also hope you're being well-looked-after and well-fed while in hospital, with a few friendly souls nearby should you feel like socialising. And is you're not in the mood, I'm sure there will still be someone here later, now we have a thread going.
Hope all's going well for you now.

Hi em I am feeling a bit brighter as it turned out I had cellulitis and needed a big dose of antibiotics.
Drain came out today and although fevery I am getting there. They have said about me going home tomorrow if I want but it's my decision.
Will post some more tomorrow as keep dropping off lol

Good to hear from you wannabe, and that you're feeling a bit better, although antibiotics can make anyone feel worse. I was going to ask about a going-home date, then thought it would be far too early! Everyone would rather be at home, but I still think it's a bit early, with the drain only just out and so soon after a big operation, but it's good news if they think you'll be ok at home.

I'm sure it's good for you to sleep, as poor old body probably does feel as if it's been in an accident and desperately needs rest to recover. I remember dreaming I'd been stuck in a tumble-dryer after surgery, and at some level we are in shock for a few days after, so I'd enjoy the sleep while you can - it's an escape I think.

Sending best wishes for tomorrow (and for the boys). Em

Hello again, R3, hope you're still around, as I've looked on the site you mentioned for haramaki (garment) and got a zero, obviously I'm missing the link. I'd really appreciate seeing a picture/details of this, which is totally new to me and just might be useful, now I'm feeling up to the experiment.

I don't know how to inspect earlier posts without losing this one ( I'm one of the slightly slower silver surfers) so can't check on your current health (or even remember things like that after a whole week or so), but hope you're keeping well.

Hi Em, apologies, they seem to have completely updated the website (good for me as there's now an internal pouch section!) but I can't find the page of useful products which is a shame. But this is the website for haramakis. It may well be unsuitable as it's nowhere near as strong as a medical support belt I'm sure, I wore mine for comfort and security rather than any physical need :) I think they would be quite easy to make too, from an old tshirt or something!

Thanks so much for fast reply (Are you a R3 or a Rasputin?) and I'm pleased it's not my fault I couldn't find the haramakis.
Support garments are certainly a bit fierce, and I would like something for "those days" so it could well be suitable. I make an amazing number of items from old tee-shirts, so it seems like just my sort of thing - something else to baffle helpers while assisting with laundry "What is this?"
once again - I don't even get embarrassed any more.
I'll look up the link when I resume laptopping again.

I had hoped it would get shortened to Rasputin but it's usually RahRah, I've not had R3 before, I don't really mind to be honest :) I'm thinking of changing it soon anyway.

Not your fault at all and I'm grateful as I found the extra resources for internal pouches :) there is so little information out there and I had been planning to contact them about including more information so they have obviously read my mind!

Interesting garment indeed, Rasputin, particularly as I'd probably need the mumsy variety, considering the hernia. I don't understand how it can have 3% elastic and stretch to cover a bump then revert to pre-pregnancy size, or how a tee-shirt could have sufficient stretch, I'm sure mine would just stay baggy. I do have something similar, with an opening for the bag,(Carefix by Stomasafe) which is very soft and comfortable, something like a stretchy vest fabric, which is sold as support, and I'm sure it was much less expensive.

I think I'll see if the nurse can let me see one, as well as having another experiment with the Carefix. Thank you so much for finding the details; it's certainly interesting.

Do I understand correctly that you've now had a reversal, and no longer need any support? Life must be so much simpler, if so. I'm presently having to cut every bag connection to size, due to recent change in stoma, and use more of them as a result of fixing the blockage (probably tmi, sorry). It's just one of those times when alterations in circumstances mean it's more timeconsuming than usual, and less easy to forget about.

Wishing everyone goodnight, with a smooth recovery for wannabe.

Yes they are rather pricey. I'm not sure the nurse will have access to them as I don't think they are related to stoma support at all. There used to be a page on the IA website with links for various products that people might find useful and they were on there.

I don't know about the stretch, I had a large one to start with and then as my stomach swelling went down I got a medium. They are similar fabric to a stretchy/slightly thick t-shirt. The other one you've mentioned sounds like it is probably more suitable though :)

All the issues sound like a right pain. I hope things calm down soon it's good that you're usually able to forget about it.

Apart from my surrounding skin being completely destroyed, I think having an ileostomy was a lot less hassle than my ileoanal pouch to be honest! I had my reversal last January and I'm still having various issues. But, I much prefer it to the ileostomy so I'm happy to persist :)

Thanks for adding the details, Rasputin (now why did you want to use that name?) It seems that my light support garment is even softer but with more stretch, and is way more comfortable than the official hernia supporter, which I seem to be getting used to.

Such a shame you're still having problems after the reversal, but maybe this is usual? I didn't get the choice, and not sure I'd have opted for more surgery, but maybe that's an age issue.

Hoping that all's well with wannabe , and wondering if you decided about going home? Thinking of you today, as usual, and hoping that every day does bring improvements with lessening of pain of course.

Good morning all, and special greetings to wannabe, who might be at home by now - hope all's going well for you, and that you'll be able to drop a line before too long. Sending best wishes again, Em.

Had forgotten about this thread, until I had another difficult day this morning, but have wondered now and again how wannabe's recovering.

I don't have much news (apart from having more measurements for new support garments), and assume that other posters are short of news too, but I do hope we can keep something going, particularly for newcomers.
Anyone who'd like to PM me on the subject is very welcome, and thanks to other posters who have volunteered similar.

I realise that the original question about this particular procedure was posted a couple of months ago but my DH had a pelvic exenteration back in September (bowel cancer that had migrated into the prostate) and we've got considerable experience of what it is like to have this surgery and live as a "two-bag wallah" afterwards so please, feel free to ask any questions.

What I would say is that while nobody would jump up and down in their eagerness so have this particular procedure, there is indeed life to be had afterwards and certainly, my DH isn't living his life as a spectator confined to the house!