distressed with ileostomy

[FabulousGuineaPig]

Haven't slept all night and I'm feeling distressed. I've had an ileostomy since the age of 28 and I'm now 46. It came out of the blue. i'd only been ill for a few weeks not years of colitis like most people. it's a long story. Believed it would only be for less than a year then would have it reversed. Delayed because the op can cause infertility. got no advice Eventually got reversal operation 9 years ago and ended up with a combined vagina and rectum! (fistula after op) 2 major ops to fix. Didn't work been waiting 7 months now for another major op to fix and finally get rid of stoma but surgeon being not hopeful. Can't wear hardly any of my clothes for years. never had a relationship. haven't been in steady work since 2004. get up all night to ampty bag for last 13 years. Exhausted from lack of sleep. Nearly battered the stoma to death tonight. lots of blood. happens often. I'm fed up of everyone saying how its given them their life back and most peoples reversal works fine. Its taken my life away. feel like jumping off a cliff. Help.

I’m so sorry you’re feeling like this. Firstly, have you ever spoken to anyone at the IA? They should be able to give you over the phone support and signpost you to some real life help. I think you need to go to your GP and be honest about the strain that your mental health is under.

When was the last time you discussed your overnight output with someone? There are ways of reducing that, hopefully someone can help you to get some sleep.

You’re right, I think they’re so much harder to deal with psychologically if you haven’t been ill for a long time before, and I think some counselling or talking through it with someone could really help you. Good luck

I haven't had to have a stoma myself, but I have had bowel surgery that might have gone that way, I live with a lifelong bowel condition and I didn't want to read and run. I am so sorry to read what you are going through, OP, especially with the RV fistula etc.

OK, I know you want to think of the stoma as temporaryand maybe it is. We'll get to that. But even if it is temporary, you have to live with it while it is there. If you can't wear your old clothes because of the stoma, if finances allow get clothing that does work for youjust as you would if you were pregnant, or moved to Antarctica.

I also think you need to be honest with your GP about the effect the stoma is having on your mental health, your sleep, and your physical health. Stoma or no, temporary or no, you should not have to live in misery. Is there a UK equivalent of a stoma care nurse who can help you find a solution that means you will not be up and down all night emptying your bag? Sleep is so, so important for mental health, especially with an underlying condition.

Finally, if you can I strongly recommend looking for a way to live with the stoma. If the surgeon is not hopeful, you need to have a plan. Your GP could be a good help here. Your stoma care nurse could be. A support group for folks with bowel conditions could be. What is preventing you from working or having a relationship? Is it something to do with the stoma itself, or is it confidence? Is that thing something that can be ameliorated? Again ask your GP for help, here, and your local colitis charity--there may be resources you are not aware of.

I get it. Living with a bowel condition isexcuse the punshit. I have felt like you, wanting to die, never having a relationship, not seeing how I was ever going to have any kind of life. I really hope you can find a way through it.

Oh this sounds awful, I really feel for you. This level of output does not sound right, especially overnight. When did you last see a stoma specialist nurse and a dietician?

Have you got a stoma care nurse? I'm sure they vary but the people I know with stomas (it's surprisingly common) sing their nurses praises regularly. My young friend also turned a huge corner when he started going to a support group (he was a week before he was due to get married when diagnosed with bowel cancer due to the brac? gene, they scheduled surgery for the week after the wedding.)

Somethings not right OP. DH had a stoma for 4 years. He was able to wear most of his usual clothes, and the output was minimal overnight. And very rarely had blood.

His stoma nurse was fantastic, if your local hospital doesn't have one then ask your gp to refer you to one or I think you can self refer.

DH was told they wouldn't do a reversal unless his stoma was working well and everything settled. You need to try and address the issues that you are having and then push for a reversal if that is what you want.

DHs stoma was also a shock and a medical emergency. Went to work as normal Friday, woke up in HDU Saturday night with a stoma so I understand it's difficult to accept. But without it he would have died so it was always a love/hate relationship. You don't need to love yours but you do need to learn to live with it. The stoma isn't preventing a relationship, after 3 years ttc we conceived ds within 6 months of the stoma. You can wear most clothes, we had holidays and swimming and everything with a stoma and dh is a builder and was back at work within 4 weeks on light duties, and back to normal in 8 weeks.

For most people a stoma doesn't stop them doing much, am not minimising the impact of one, but you need to sort these issues out and move forwards with the stoma and then work towards the reversal.

because all that sounds quite harsh and I know they aren't nice. But you can make it easier if you get the right help and support.

“Nearly battered the stoma to death tonight.”

Does this mean you are self-harming OP? In which case you need really urgent mental health support

It sounds like you have Crohn's, with the blood and high output do you have disease higher up?

Thanks for replying to me and your concern and trying to help.
I'm still awake. not been asleep all night. not unusual After I just changed the bag it started leaking and I had to change it all again. The blood is because I hit the stoma and squeezed it because I hate it. I have before ripped the bag off and thrown it across the room splattering walls. ceiling and carpet wih . Then had to wash all the walls and one time I couldn't get it off an dad to repaint the walls. I do not have chrons disease thank god and my output is normal but for 12 years now I have just not been able to stand the thing and anything in the bag drives ne mad and I have to go and empty it. It keeps me awake because I'll just be relaxing to sleep then I feel the stuff sludging out the stoma and jolts me. I have not found my stoma nurses any help at all or the IA. They just get my back up. The comment about being able to wear normal clothes really annoys me. I have a short body with hardly any room for the stoma and bag so waistbands have to sit right on it. I am limited to stretchy leggings or address with tights which is not that practical. people who have no clothing problems with a stoma or lucky that's all because of their own particular body shape being easier to accommodate. I'm fed up of people not getting this. I have lived in horrible clothes for the best years of my life. I have been to my GP and eventually was referred to a psychologist but it didn't help. I have had to go through this alone remember. I have never had a partner.

You have bravely put up with so much.

There will be some way of helping you if your doctor/stoma nurse know what difficulties you have having.

Please seek further advice from your medical team. Maybe take this thread along for the them to read.

It's too late. I have been like this for about 13 years now. I have lost the best years of my life already. They are gone. Stolen from me. I am not getting them back. No amount of counselling can make up for the grief I feel. I've lost my life . I have lost today. Too exhausted to do anything like at least half of my days. ca't eat. Feel weak. it is over.

You are a good person doing your best with the resources you currently have.
I get that you don't want to have/can't see yourself taking another perspective on it at the minute.
You feel if you hate it enough it'll go away. If you stop hating it that means it's staying. You don't want to be its friend.
There's a lot to do with shame and fear of stigma going on. There's a lot about rejecting and feeling rejected too. What will people think of me?
Moving forward in your life is about building resources - inside and outside yourself. Counselling and especially peer-support from a support group might really help you take a different perspective.
If you are willing. You only have to be a small bit willing at first.
Other people's experiences can help you take a different viewpoint. Their acceptance of you helps you accept yourself no matter what way you are. You might find out some really good stuff about yourself.

Oh op this sounds really tough

Please go to your gp and explain exactly as you have on here, there must be a way to improve your quality of life so you can start to enjoy things again.

This stoma is controlling your life at the moment, but it doesn't have to. Please ask for help.

I have seen a psychologist and it hasn't really helped. I get what you mean about if I hate it it means its going. Problem is I still don't know after all these years if its going or not. Its easier for people who know the stoma is permanent from the start. I don't find support groups for this help me actually because they tend to be dominated by people who are happy with their stoma from early on either because they were ill for a long time so it is a relief or people who don't really have to deal in depth with it because they only have it a few months or years or often have a supportive partner helping. I am on my own. I have been to my GP and told them this. there is no more help for me. I have to deal with it own my own . there is nothing else.

I was a medical Secretary for a gastro consultant. We often sign posted patients to www.colostomyuk.org/about-us/

FabulousGuineaPig I can feel your desperation. When you feel this low it is so hard for you to be able to find the people that can help you.

There are people who can help - you just need to find them

Have you rl support who can help you find the help you need?

You do not have to deal with it on your own - one step at a time. Have you discussed this with a friend or family I mean really discussed it, no brave faces or holding back so they will not be upset. Sometimes this does need to be a close friend.

If you feel alone and not able to discuss with anyone go back to your gp take this thread and let them know how you really feel equally the Samaritans are a fantastic resource and will have organisations that CAN help.

Please do not feel you are all alone

I don't have any family or friends to discuss this with who will help. I phoned the Samaritans about it once and the lady told me there were people worse off than me you know. An example of what has happened when I have tried talking about this with some people is thay have said thay know someone else with it and they are totally happy with it. it's improved there life so much and someone else who then started talking about her mother with severe arthritis and made out like if I had that then I'd really have something to complain about. I always get compared to someone else.

FabloulousGuineaPig how bloody insulting and frustrating for you - that would give me the rage.

Why do people always make this about them

I am no counsellor or medic but I know there are people that can help - be demanding I think you sound way too nice and are used to getting on with things yourself. You do not need to do this yourself - start with gp and keep at them until they do help

Have a look at a Kock pouch, OP, in my hospital it would be the option for people whose J pouch didn't work or who had fistula problems. It's possible you'll have to go to a different hospital, as it's a less common procedure. Read up on it and ask if you think it could work for you.

Whatever you do you have to take steps to feel more in control. You also need to ask more questions. I had a reversal 9months post op, I knew my fertility would take a 10% hit, but balanced that against TTC younger (as I knew there might be issues ) and saving for IVF, just in case. It really helped having a sense of control - can you put any safety nets in place for the scarier outcomes?

There's obviously a communication problem between you and your surgeon, can you move to a different list or talk to the nurse specialist after to clarify what the consultant told you? Can you take a friend from a more medical background? Do you have a good GP? Might that be a first step you can take?

It is horrible though, I hope you find a way to cope. It must be so disappointing to have had the reversal fail. Btw, the pregnancy belly bands can be good for "flattening" and hiding that strip between jeans and tops.

If you didn't have the stoma, what would you be doing with your life, how would you be spending your time? Today for example - if you didn't have a stoma right now, what would you be doing this very moment? And would that really be so different if you did or didn't have a stoma?
Often a psychologist is trying to problem solve or is focused on functionality, to see how the person can function in their lives.
A counsellor or psychotherapist is different from a psychologist in that they deal with the 'person' and how they view themselves.
Is it the case that you don't seek much help about how you feel, because you don't even want to engage in support groups or really have anything to do with it or talk about it because the idea is fixed in your mind that you are 'not supposed' to have a stoma?

Hi. Just tried to sleep but can't so restless. I don't remember sleeping at all this week actually. Got up and I got a fisha nd chips delivered because I can't face making any food. That's all I've eaten today. I didn't eat the chips couldn't face them. Not been out or spoken to anyone today except the man who brought the takeaway. I'm just drinking tea and watching TV tonight and been crying. I've got a book about mindfulness and it is helping a bit and so is talking to people on here a bit. I think I've got a slight bug so I'm coping even worse than usual today. My surgeon now is fine and I'm meant to be getting my operation redone. Stress. I don't know what I'd be doing now if I didn't have the stoma but I'm sure I would be quite content and doing ok. Yes seaweed your last statement like the others is right.

Am so sorry of my reply upset you op, but I hope you are finding comfort from this thread.

I haven't had a stoma but have seen first hand the issues it causes. But the stoma saved dhs life so as much as we hated it, we both knew he wouldn't be here without it.

My puppy once got a hold of a bag and shook it everywhere so I can relate to scrubbing shit off the walls and the ceiling and the curtains.

I do think that you need more support. Of the stoma nurse you have isn't helpful then swap to a different hospital. And maybe seek a different type of counselling. And the question about what you have been doing without it, only you can answer. DH would have been dead so our answer was simple enough. But don't be too harsh on those who feel better for it, their lives have probably been saved and definetly improved with one. And they aren't done lightly either. It's usually a last resort.

Definetly look for some information regarding diet. DHs was massively affected by what he ate and when. Not saying that is always the case but certainly look into it.

And be kind to.yourself.

So sorry to hear of your distress OP. I was given an unexpected ileostomy after emergency surgery so, although I had consented to the possibility, I had not got my head round it in advance. I too had severely broken nights (up every hour) and all sorts of limitations - couldn’t wear anything which did up at the waist, even tights or leggings pulled down on the appliance and risked pulling it off. I also had to drape myself in long scarves to disguise the contour of the bag.

I can totally understand the impact on your personal life too. I didn’t want anyone to see any evidence of the stoma or the equipment. I also hated the impact it had on me at work. I am a barrister; special arrangements had to be made with the judges so that the court day could be adapted to my need for regular breaks to attend to my high output stoma. So embarrassing.

I was far luckier than you in that I had an early and successful reversal. What you have been through is awful. I hope you can access some better support (from a different stoma nurse?), not so as to fall in love with the thing but to cope practically and not feel so isolated. Even just making progress on the sleep aspect would help you, I am sure (are you taking Loperamide for the output issue?).

In any event I hope that you are having a better night, and that you have a better day ahead.

Hi. thanks for your replies and help. It'sfine Frouby you didn't upset me. That's funny about your puppy. Trust dogs! Not funny at the time though. Hi larkdescending. When I have worked I had a few embarrassing incidents. Once with the bag leaking and once when a colleague had to use the toilet soon after me. I suppose you have to be prepared and plan to get round these things.
I slept quite Ok last night. It's the first deep sleep I've had for a week. I thought I was never going to sleep again after my bout of insomnia. Obviously so exhausted.

Yup, the stomaand the diseease, and the loss of confidencehave stolen years of your life. It's awful. My disease robbed me of at least two things that will break my heart forever, so I get it. You need to mourn that, but part of mourning is letting go. You CAN'T get any of that back. It isn't possible. You DO still get to choose about how to live today, though. Yep, there are limitations and you are still living with the stoma. That isn't and doesn't have to be everything, though. It will be, if you only ever look back, but you can choose to look forward as well. What do you want from life that doesn't involve your stoma? What could you be doing to get that?

Back again . had another awful night. No sleep at all. I haven't slept for about a week now. I've been trying. Doing meditation which helped for a few days . I don't know why it all blew up today. I was up and down all night emptying the bag and finally ripped it off it was leaking a bit anyway. Anyway couldn't get new one to go on right and had to take it off again . Also beat the stoma so it was swollen and bloody. Blood went all over the carpet and my nightie and I was scrubbing the carpet naked with blood and s all over me. I hate how thin I am. I try but its also living on my own but I don't know what I weigh but its probably 7 and a half stone. I then had to go down tonthe laundry room as I don't have a washing machine to wash my bloody clothes and towels before it sets and won't come out. It's a new nightie and I really like it so I'm upset. I can't wear any of my clothes because of the stome and nobody believes me. Even the stoma nurse. All I have that's fits right is a pair of black leggings. I have no one to turn to. I have been everywhere my GP, stoma nurses well that's actually the only professionals I have to go to. My GP though nice is not well informed about stomas and the stoma nurses don't seem to get my problem so I don't bother with them. I'm really fed up. I've been waiting 8 months to have my operation redone now.