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?

[RahRahRasputin]

Not got a stoma myself but seen your post has been unanswered. I had one temporarily (ileostomy) but never had this problem. Have you got a stoma nurse? Does your team have someone on duty over the weekend?

To be honest, I'd try and see an out of hours GP sooner than Monday as you've already had bowel surgery and presumably have an underlying condition so it is worth getting checked out.

Have you tried Fybogel? I've been prescribed it, but not for constipation, but it is a gentle laxative as well. It is available over the counter, tastes a bit gross and "fake", but is bearable. Movicol is what I've been prescribed "just in case" for this situation but seems unlikely I will ever need it! Otherwise if nothing else, oily foods might speed things along...

Obviously read the leaflet properly and check with the pharmacist that it is safe after your surgery. I've had a pan-proctocolectomy.

I hope you are feeling better today

[RahRahRasputin]

Actually, another thought, not wishing to worry you. Has someone confirmed that it is definitely constipation? Only I had similar symptoms last year and was eventually admitted to hospital with suspected adhesions. It sorted itself out and no one has ever mentioned it again. (In fact, I thought they'd decided it wasn't adhesions and only discovered them when I found my discharge letter a few weeks ago!)

If this is a possibility at all then definitely get in touch with the out of hours service.

[EmNetta]

Thanks so much for your reply with useful information. Yes, I've a stoma nurse, who suggested I call for an ambulance if this happened again, but my hospital experiences don't bear repeating so I'm trying to manage it myself. Movicol is supposedly best for my condition, plus as you mention, adjusting diet, which I forget some-times.
Today is much better , but thanks for idea of contacting OOH service. My surgery was for bowel cancer, and only underlying condition (in that area) is a hernia, which will no doubt be inspected again on Monday.
Wish I knew what your pan-something meant; I did have an explanatory leaflet at one time, but didn't really take in the other options/conditions.
Thanks again for your kind reply, and I do hope you're now fully recovered.

[mummylin2495]

Hi, my aunt has this problem now and again. She has had a stoma for about 19 yrs now. I, afraid I can't tell you what she takes but I do know that on occasions she has had to go into hospital for a couple of days until she is clear again. If it persists I would def get in touch with doctor / hospital

[EmNetta]

Thanks for your response mummylin. It's not a subject people know much about, unless personally involved, so rarely gets discussed in public. I just felt so bad yesterday, it seemed worth asking here. I'll definitely ask GP for suggestion/s on Monday, as these incidents are happening more often, and I've just remembered there is a charity offering a helpline I could call next time.
Hope your aunt's condition becomes more manageable.

[mummylin2495]

Oh she has done very well she too had bowel cancer but apart from a few hiccups she lives a normal life. Do you want me to ask her what she takes ? She now visits others who either are just about to or had a colostomy.

[Hattifattiner]

Do you keep properly hydrated? Eating loads of vegetables? When it comes on stop eating nearly everything else other than veg for a few days, while keeping up fluids? And moving lots, walking, etc?
Are you in touch with support organisations such as Colostomy Association?

[Davros]

Is your Stoma fairly new? I've had one for about a year and a half. At first I got terrible pains and felt "blocked" every 5-6 weeks. This was accompanied by the opposite of what you are describing and it was filling up very quickly and was mostly water. After the first six months this stopped and i haven't had it since. I've also got a hernia which is painful sometimes. I am entitled to some sort of support garment which I need to chase up as I had put it off due to more surgery in April this year. I have always been given movicol for any sort of constipation threat. As I have not had the constipation problem but the opposite, I was told NOT to change my diet to high fibre but usually to avoid it. I too completely forget and just eat normally. Hth

[EmNetta]

Mostly yesses most of the time, Hattifattiner, apart from daily yoghurts, and walking with a stick due to back problems these days. I'd forgotten about the Colostomy Association until this evening, so thanks for reminder.

It's good of you to offer to ask your aunt, mummylin,and I'd be most interested in the information, whenever convenient. Glad to hear your aunt has done so well, and is able to make such a difference to others' altered lives.

I'm really pleased I thought to ask for information here - three cheers for Mumsnet again, and thanks to all for replies.

[EmNetta]

Thanks to Davros too, we seem to have cross-posted. It's been more than five years since my surgery, and only about a year of present problems, so I can't complain too much. Such a shame you had problems so soon after the op, but glad things have settled now.

I've only recently got support garments, and not at all sure they're helpful. Nurse was surprised that garments seem to make problem worse, but it's only since I lost a few inches that I'm able to tolerate them without what seems to be a blockage (with extra side-effects).

It's good of you to share your experiences D, and I hope all's now well after your recent surgery.

[RahRahRasputin]

I had bowel cancer too. Is there a special handshake we should do? Pan-proctocolectomy is removal of colon and rectum, which must be a bit different as you have a colostomy :) apologies, I was assuming you might have UC or Crohn's when I mentioned underlying conditions.

Sorry to hear your hospital experience was not positive. Hopefully your stoma nurse might be able to offer more ideas to prevent this. I wonder if something like the Fybogel I mentioned could help, either taken regularly or when you first feel symptoms coming on. It is a bulk-forming laxative, there are a few types.

A while ago I tried to start a thread for people who had bowel 'replumbing' of any kind but no one was interested so it is nice to meet you.

On the support garment front, I was offered one but by the time the swelling had gone down enough for me to be measured up it was nearly time for my reversal anyway.

I felt very vulnerable though and liked something over my tummy all the time. I started off with M&S over the tummy knickers but I managed to wean myself off them when I found something called a haramaki on the Ileostomy Association website. They're obviously not as supportive as a proper garment, but it felt nice to just have something extra there. If you're at all interested I will find the link.

Davros I sympathise, I have similar issues and have been on a low fibre diet on and off since my surgery almost two years ago. I built up to eating normally without problems after my surgeries, until I had chemo. The diet does seem to help a bit, although so insanely boring and a bit tricky as a vegetarian!

[wannabestressfree]

Hello everyone I am a fellow stoma patient :) having surgery next Saturday for para stomal hernia.

I have short bowel and crohns so not ever had constipation- have opposite problem. Around if you would like to chat though xx

[Davros]

It is great to find you all! Because I "carry in as normal" everyone thinks it is easy. I suppose it is most of the time and far better than the alternative as I always say! But it's great to find people who know what it's like, having to carry kit around like when you've got a baby, checking all the time to see if a change is needed, worrying about pan caking, I also hate changing when I'm out and about and prefer to wait until I get home if at all possible, when you're at someone's house feeling like you need to hide the evidence if you've changed etc etc. I had anal cancer which I still find embarrassing to say and always joke that it's because I talked out of it too much!!!

[EmNetta]

Agreeing with Davros that it's great to find others in similar situations, although varied in details, and yes, it's a real nuisance stocking-up for even a few hours from home. I will ask GP about Fybogel tomorrow.

All best wishes to wannabe for upcoming surgery, and I'd be really interested in the details whenever you feel like discussing same. Might ask GP about hernia surgery too, but I'm really scared about hospital again, particularly remembering the pre-cancer diagnosis when I was feeling ill, bleeding and blackouts, and they just got me stabilised and sent home while I was using the walls to stay upright, with instructions to see GP. Can't face another few hours like that, waiting for the water which only arrived when consultant passed by again - I could go on, hoping that no-one else here is using same (Northern) hospital.

I started with M&S underwear too, in fact, it's my usual as I've more than one size/strength. I've a SupportX item too, strongly reinforced, which requires huge strength to pull closed the fastening fabric, so I've stitched one in place and use pull-on system for this too. Not heard of the item you mention, R3, and think I'll delay decision.

As this can be such a personal subject, I'm wondering if we should ask to be moved to Off The Beaten Track, if anyone else is interested in continuing contact between us? Hope we all have a good weekend anyway.

[gobbin]

High output Ileostomy checking in here, hello everyone!
Mine's relatively new (June) and is planned to be reversed in a few months' time but if I had to keep it, I wouldn't mind. Now it's settled and I've got convex bags it's ticking along ok.

EmNetta I think with your symptoms and hospital history I can see why you're holding off til seeing the GP Monday but if it isn't subsiding then hospital is the place to be I suppose. How are you today?

[EmNetta]

Am back to "normal" thanks gobbin, and welcome to what appears to be a proper thread. I knew there must be a few of us around, and am so pleased to make all these acquaintances. It's good to hear of someone else who feels settled, and that the bags are not too bad, and I'm sure most of us can look back to times which were really difficult and painful before diagnosis etc.

I won't continue with hospital details, but there are worse, believe me, and I quite agree I'll probably have to go in sometime, but am really pleased to still be at home - with some new friends - this weekend.

Hope all continues to go well for you, and congratulations on managing so well so soon after the surgery.

[wannabestressfree]

EmNetta thanks for the reply :) I was the same as you though in that I had quite traumatic surgery last year and really needed an urgent repair to the para stomal hernia but I refused. I just couldn't face it.

I go up two dress sizes during the day round my waist so am so limited as to what I can wear and am unable to wear a belt as it would constrict the stoma I knew I had to bit the bullet. So in I go on Saturday morning. I KNOW I need it done, I can't walk that well, am off work a lot (teacher) and it is ripping my stoma apart which has pancaked.....

I want my life back. Just nervous.

[EmNetta]

Oh dear wannabe, I can understand your reluctance to volunteer for more surgery, and hope that Saturday's experience will be the last one necessary for you. It should make such a big difference to your life and be really worthwhile. Being unable to wear a belt must be difficult, and I too need a stick to walk, which I find tiring and inconvenient as well as painful due to worsening back problems.

I've had a good old moan here this weekend, but it's a relief to be in touch with people who understand. You will indeed get your life back wannabe, and I'm sure it will be fully worthwhile. All best wishes for Saturday.

[wannabestressfree]

Thanks em. It's hard work with the children and I am just keeping my fingers crossed that I can have it keyhole (he is going to try).
I hope you feel better soon and don't hesitate to pm me if you want a moan :) x

[EmNetta]

It must be very difficult with the children wannabe - are they very young, or old enough to help? It's not the type of illness one can casually mention to strangers when needing a hand/ a loo, just a nuisance, so I'm really hoping life gets better after Saturday, and am sure you're doing the right thing.
Thanks for the offer of pm-ing you, very much appreciated. I also liked R3's idea of us having a special handshake or similar, in order to recognise each other, as I've never previously felt so cut-off from rest of the world.

Just waiting for one of my helpers to turn up and drive me to surgery, having so many bad days, I don't risk being dangerous to drive myself for appointments. It's taken a few years to organise practical help, but makes such a big difference, they're worth every penny.

Must go, all the best.

[Iamcuriousyellow]

Is your abdomen hard? Some one up thread was talking about adhesions. Not me, but a family member had this with ileostomy. You sound poorly, are you going to see GP or A&E? I don't really understand how constipation can coexist with ioeostomy/colostomy, but my experience is second hand. I think you should get looked at.

[EmNetta]

Just back from GP appointment, Iamcuriousyellow. Yes, abdomen hard, GP inspected and confirmed blockage, (as I suspected) and offered various other laxatives apart from usual Movicol. Constipation is due to large amount of painkillers, with most patients taking a higher laxative dose, I'm told.

After reading various info here, I was resigned to a hospital visit, at least for a scan, but nothing else was offered, and I'm due to double Movicol dose - when I've done some shopping and don';t have to leave the house, of course!

Thanks for all the sensible suggestions, sympathetic understanding and useful info, etc. Nice to "meet" everyone.

[wannabestressfree]

Em glad your feeling better and have some answers!
Nurse came today to go over a few bits. They are going to attempt key hole but she reckons the money is on open surgery meaning I will need 12 weeks off after. I am the only person on the list.
My boys are 17,13 and 10. They are thankfully older but eldest is autistic and has mental health problems and they are all a bit micro managed by me (and I am at fault there) they will have to fend for themselves a bit :) with a bit of direction from the sofa.

Keep us posted how you are.

[EmNetta]

Thanks for the update, wannabe. Hope you can have keyhole, but I think sometimes they choose the less costly option, not what's best for the patient, and with the three boys plus a job, twelve weeks' recovery-time would be inconvenient. My surgeon was hoping he could do keyhole, right up to the last minute - what a system.

I've been really impressed with the nurse-specialists, and hope you're happy with yours. GP admits that ours have a greater knowledge of this subject, and I'd like to have more contact; not just emergencies, but they do all seem to be very busy already. There used to be a local group, but it was difficult for me to travel then sit for a couple of hours, which is why I don't know any local colostomates.

No-one's ever offered me any surgery for the hernia, but that's probably my age. (Pensioner). Hope yours will make a lovely big difference, and that you'll soon be dashing about with the boys again. Do let me know how it goes.

[wannabestressfree]

My surgeon managed to juggle the codes around so I am having my op done privately. The stoma nurse comes to my house too so I don't have to travel to fit a group in.

I agree with cost. Unfortunately what's left of my bowel is glued together with adhesions so I reckon my fate is sealed there. Oh well I am focused on the positives. Nurse reckons I will lose two stone AND he has offered to tuck my tummy whilst he is there if I need open surgery :)