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?

Sounds like an amazingly helpful team you have there, wannabe (although never heard of the codes). Everything sounds as good as it can be, apart from underlying situation, of course, and am so pleased you have a few extra positives for post-surgery. I'd dearly love to lose a couple of stones too, although as I stop eating every so often, at least I'm not putting it on. The convalescent time is usually frustrating, but I'd look on it as a bit of a rest before resuming normal activities again.

I don't feel I've got much further, but will be contacting GP/nurse again after a couple of weeks if laxative doesn't shift some of the solids around stoma (sorry if tmi, not used to being able to discuss this).

Hope all's going well with your pre-op organisation, and that you have either friends and/or family standing by to encourage the boys, who will naturally be a bit worried. Has anyone given any idea about length of stay away?

I have everything planned to military precision :)
If it's keyhole probably 3-5 days and 7-1o for open. Luckily we are 20 minute walk to the hospital and ds2's school is 10 minutes away. At my pre op they all came in for a nose and where told they could come whenever they liked and have a meal. Ds3 is going away with his school for a week next Monday so that will keep him busy.

Don't worry about the TMI I think it comes with the territory and you get used to it. The stoma nurse was telling me about her previous patient to me who wears four bags due it fistulas and I felt quite humble. There is always someone worse off I guess.
Hope you feel better soon. Keep me posted.

Hi everyone, I've just seen this thread and it answers some of my questions. I have started my own thread but you ladies seem to be the experts so I hope you don't mind me popping in.
Following a recurrence of my cervical cancer my surgeon is now going to carry out a total pelvic exentertion. In a 13 hour op the team will remove all my reproductive organs, lower bowel, bladder and vagina. I will have two stomas for bladder and bowel waste.
I'm just keen to learn the truth about living with stomas
Do they hurt
Do you get used to messing with the wound (I'm very squeamish)
Can you wear fitted clothes
Do they ever leak
I've read further up about you poor ladies having to be in hospital following problems. How common is that?
And sex, dh is so supportive but I can't imagine ever feeling sexy again. That's even assuming my new reconstructed vagina works.
Sorry to ask a million questions. My specialist nurse is lovely but I want the real nitty gritty that I'm too embarrassed to ask.

I am just off to bed now but promise to give you a detailed answer in the morning :)

Thank you

Morning :) I am quite happy to answer your questions but remember they are from my perspective and I have crohns. My friend has bowel cancer and hers is a bit different. Am always here if you want to chat though and good luck with everything :)
Does it hurt?- it doesn't hurt day to day but it takes a bit of getting used to. You have some odd sensations when they are working. The skin around my stoma can get sore and that is painful but your nurse will be able to help you with cream and powder that cleans up the area.

Do you get used to dealing with the wound? - absolutely. It used to take me ages to clean it and deal with it. I can now do it in 3o seconds!

Can you wear fitted clothes? - yes I do. No problem there. The only issue I had was because I didn't rest properly afterwards and I developed a hernia under the bag which has given me a bump.

Do they leak? - not if you have the right bag and that's trial and error. I did numerous times to begin with but now the bags I have are great and seal well. Always always keep spares with you.

Problems- I have had a few but have short bowel which makes my output huge - empty 15 times a day. My friend has no problems and empties once. I think it's luck of the drawer. Push for a community nurse though, mine has been invaluable.

Sex- you have to have a sense of humour! First time was disaster. My bag kept making noise and we kept laughing. End of that :/ lol. We have a normal sex life now though and it's fine. You can buy specialist underwear and covers and I don't use clear bags.

Above all though, I don't regret it for a second. It saved my life and also gave me a normal life. It can be problematic and takes a bit of time but it has been worth it.

Please message me if you need anything or just an ear xx

Quick note here as awaiting driver and will have to dash, but briefly, no, no pain at all (as no nerves, I understand).

Yes, one gets used to changing, and it's probably quicker than a "normal" loo visit. I was able to try a few different bags, thanks to nurse, and finally found one with the right glue for me, so just keep going, you'll be ok.

Yes, occasionally, to leaks, but just keep an eye on it, and as wannabe says, always carry spares, wipes etc. and you can get a key to nationwide loos, so don't be stuck.

Sorry, must go

Apologies for abrupt ending, but had to go for another medical appointment, I felt so awful today, not sure how I managed (and blood-taking was horrendous, both arms out of action but at least it's done and out of the way.

Fitted clothes? Well, no, I don't, probably because of the hernia, which I understand most people get eventually. There are various styles and strengths of support garments, so it should be possible.

No experience with sex and a stoma, I'm a pensioner and widowed, so rarely even think of it, but I know people do.

Colostomy Association produce a magazine with answers by a nurse-specialist, articles by experienced patients to help newcomers, and there are probably others too.

Laurie, you're welcome to ask questions, and I'm sure other posters don't mind. Today I heard about someone local having similar problems as well as cancer, so there's always someone worse off - and always someone who's made a really good recovery and leading a full and happy life.

Haven't checked Health subject until recently, so not seen your postings yet, but glad we do now have contact.

Hello again wannabe, haven't forgotten you but it's been a busy morning.
Glad you do seem to be organised for your hospital stay, and hope the boys will be able to manage the domestic chores for a few weeks - if not, it's really worthwhile paying someone to come in. I had virtually no help after the op, even sent home before I could contact anyone to turn the heating up, and unable to wash my own hair, etc, and don't know how I'd have managed without assorted friends and neighbours, and now I'm just grateful I can afford enough help, on the bad days particularly. Like today...

Better get next Movicol down and sort some lunch now.

Hi again Laurie, I've just found your thread, and so sorry about the details. It must have been so difficult awaiting results etc., and yes, you are brave. I'm sure your DH wants to be as helpful as possible, as you would be for him, and I'm sure you'll work something out later when you're recovered from surgery.
Others have mentioned the Colostomy Association (who have a helpline with experienced counsellers), and some areas have local support groups which the nurse will know about, apart from assorted posters right here. Good Luck.

Laurie33 I would like to give you a long, and hopefully helpful, answer but I don't have time right now. I had a 9 hour op last year. My first thought is, are you going into ICU? If so, have you been in ICU before?

Thank you everyone, I'm so glad I found this thread. I hope it carries on as it seems there are a few of us at various stages in our treatment. It's great to get answers from more experienced people.
A neighbour gave me 3 of her old colostomy association magazines today and I read them cover to cover.
Davros yes I believe I will spend a couple of days in ICU,

Sorry Davros, ICU will be new to me.

Do you think there is any chance that you could visit the ICU or at least see some pictures? When I woke up there it was so alien that I was really traumatised. I gather that there is a branch of PTSD that is based on ICU experiences, no one told me! UCL are doing a study on it, I have been contacted by them and heard it discussed on radio 4. It is not uncommon to hallucinate in ICU, which I did (I think!), I believe due to them continuing to give you the same drugs as you are given during the operation for some days. I don't want to freak you out but I really want to help you prepare for it. I can answer some of the Stoma questions too but I'm off to bed now. All this from my personal experience of course.

That's very useful to know. I have a friend who is a senior nurse In ICU. I'm not sure if I'm havingy op at my local hospital or the Royal Marsden (my surgeon has referred me there as he thinks they will be quite interested in my case). I can still ask her if a visit is possible though. Thanks

emnetta lactulose oral solution is what my aunt takes when she gets blocked. But if this dosent work this is when she has to go to hospital to be unblocked. Good luck .

Thanks mummylin, it's useful information. I've had lactulose, but Movicol has slight edge for me, I forget the scientific reasons. GP seems to think other laxatives would be even more unpleasant, and I'm supposed to phone for an ambulance if it's really bad again. Can't help thinking your aunt has more considerate treatment, but my present GP has been much more helpful than others and head of practice used to upset me regularly before I changed.

So pleased I thought to enquire here - there's some fascinating information from lots of posters, and I really appreciate opportunity to discuss subject openly.

I'm a bit anti-Facebook, so rather not be involved again, but it's excellent news they have a group available.
Thanks again for the information (and please thank your aunt). By the way, I'm so relieved that today seems to be much better, and happy to continue with increased Movicol

Thinking of you today, wannabe, and hope all your plans are going well, with all boys well-briefed and not too stressed. Some hospitals do allow laptops etc, so I'm hoping we'll hear from you before too long, but all best wishes for tomorrow's operation, and I'd send flowers if I could. (thanks).

That's of course.

Am due in at seven tomorrow :) will post when I am up and about after the surgery. Thanks for all your support.

Hope your op went well wannabestressfree

Best wishes from me too wannabe, hoping all's well.

Hello all. I've had my stoma (ileostomy) for a few weeks now. I was diagnosed with rectal cancer on the first day of the summer holidays and had a low anterior resection on 27th August. Histology report showed the tumour had broken through the bowel wall and was in 7 of 19 lymph but luckily for me, no mets. I start a 6 month chemo course next month.
I've not experienced any constipation. I'm emptying the bag about 7 times a day. I had no idea it was possible to still be standing after the amount that comes out!
I was wondering how your children were dealing with your illnesses? DS is 6 and has been kept in the loop from day one. I've noticed that if he gets upset about anything, he seems to want to be on his own, not wanting me to see him cry. This is true for a banged knee or a disagreement at school. He also developed a tic this week where his eyes are rolling to the side. His teacher is keeping an eye on him and says that he's been a little withdrawn. Bit worried about him, to be honest. He was a bit scared of the idea of the stoma before my op, but we've called it 'Benny' and he is cool with it now. It's such a lot for them to take on at this age, isn't it?
Hope all surgery/recovery/stoma issues are going well.

Hi gillythekid, and welcome to the new thread (and the newish world of bags), and congratulations on knowing the technical terms. I'm sure lots of us will be wishing you well for the chemo course, and hoping it's not too bad. (Mine was only for a few weeks, but I didn';t do very well, and nurse kept telling me we all react in different ways.)

Seems I made a mistake complaining about constipation, as increased laxative has made such a difference; I'm now spending far too long changing bags and quite agree about being surprised at the output! However, I'm feeling much better, and sending thanks to everyone who replied and sent good wishes.

My "child" has been an adult for a long time, so not really a problem, apart from the usual worry experienced by all relatives at this time. So sorry to hear that your DS is suffering because of your illness, and hope someone with the relevant experience will join in soon, although you do seem to be managing it very well and I'm sure your son will find it easier with time.

Hi gilly I don't have children myself but if you are interested, the Tamoxigang thread has people with various cancers, mostly breast but there are others too, and many have children of a similar age to yours so might be able to advise. I post on there sometimes and everyone is really friendly :)

I have an ileoanal pouch so quite similar, I don't think constipation is usually an issue with ileostomies!