ileostomy surgery recovery

[MyStar86]

Hi,

I have had my ileostomy 3 weeks today and whilst I love having the ileostomy my digestive system has gone into meltdown I have terrible cramps I was dealing with very high out put for weeks even following the white diet etc the stoma nurses put me on Imodium which does help but it feels like my system just can’t handle food anymore I am in agony I’m sick of the constant cramp I wish I didn’t have to eat but then my output just goes crazy as it means more liquids so I’m stuck In a catch 22. I need pain relief but I don’t tolerate it well I stuck to just paracetamol but it wasn’t helping at all as my back is also killing me trying to deal with the surgery and all the cramping so I’ve been trying shortec this week which is what I had in hospital but it feels like it’s making my cramping worse. I’m so confused and lost, does it take a long time for the body to adjust to foods?? I only stick to soft white foods I don’t have anything I shouldn’t and struggle to eat much as I don’t want to make the cramping and pain worse I take the Imodium but that also just gives me tummy pain I feel like I’m going insane. I’ve told my stoma team and they said it’s normal in the early recovery but it feels like I’m getting worse and I’m so upset I feel lost and confused what’s for the best.

Any advice would be helpful. Can anyone advise on pain relief as well as I need to get something that doesn’t upset me. I can’t have morphine and I used to be able to take codeine but I can’t now which is really annoying my body does not like it. I’m speaking to the gp next week so I’m just looking from some help from those that have been through this. I’ve been taking buscopan but that doesn’t do anything it’s just all so confusing I’m doing everything that I’m told but my system wasn’t great before the surgery but now it’s just awful I keep hoping each day I will wake up and things will have calmed down but they just haven’t 😞 xx

[Dogbot]

I’m so sorry you’re going through this it’s very confusing to start with I had a very high output but I was lucky not to many cramps. It does settle down,stay with the diet and I hope the doctor can sort out the pain for you. I stayed with paracetamol 500 . I wish you the best of luck from the wife and I 💕💕

Stay safe All

Dogbot 🐶🌈Dave

[MyStar86 in reply to Dogbot]

Thank you I’m just so scared and I’m so much pain I can’t stop crying and I’ve lost myself in the pain I just feel I don’t want to keep fighting I just want it to all go away as I can’t cope anymore it’s just too much I had so much hope and now I’m devastated I feel so confused I hate everything about my life now I thought I was bad before but this is horrific. Thank you for your kind words x

[Dogbot in reply to MyStar86]

Hi MyStar86 it’s horrible to be in so much pain all the time and at this time it’s endless is what you feel, but please remember there are doctors out there that will help. Please don’t give up hope I have been there and it will put you into depression, and you don’t want that and friends and family don’t like to see you suffer. It’s difficult but try to think ahead and the happy times to come as mine have. We wish you a speedy recovery ❤️‍🩹 💕💕

Stay safe All

Dogbot 🐶🌈Dave

[MyStar86 in reply to Dogbot]

Thank you that means a lot I really have lost all hope I just keep falling apart it’s really scary I can’t see this ending as it’s just getting worse I didn’t think at 3 weeks post op I would be worse than I was before the surgery it’s really scared me. My poor mum is really struggling to hold me together I just want to end the suffering by going to sleep and not waking up because when I do manage to doze I just have terrors and end up in more pain so I’m never going to heal if I can’t rest. I just keep having panic attacks about what I can do or how I can live like this as I used to have ways of coping with my old system but now I don’t know what to do and the burning nerve pain is horrific I can’t escape it and I can’t think straight. It sounds like you got through your recovery a lot better than I am which is really worrying me.

I have the gp on Tuesday to talk to and discuss some pain relief but I know it’s my guts and pain. Meds don’t actually help that but I need something as my back can’t cope I was so weak pre surgery that now I’m a mess. I just want this gone I feel I’ve made the biggest mistake of my life and it’s something I can’t accept. I’m happy with the bag and just get on with that but the agony is what’s ruined everything.

Thank you for your kindness and I really am trying but I just can’t see how I can live like this xx

[Joeyskin]

Hi mystar86 I'm on something called amitriptyline which is an antidepressant and also a pain reliever it's helped me no end I've been on it since was diagnosed at 26 I'm now 51, I also had dark thoughts like you with my ileostomy l have a high output stoma also. I hope your gp can help if not what about stoma nurses maybe giving them a call and explain your situation. I wish you well you will come through this, stay strong. Can we get an. Update after you've seen your g.p please.Stay safe

[MyStar86 in reply to Joeyskin]

Thank you that’s very kind, I have tried amitriptyline before and I didn’t get on well with it as I struggle with anything serotonin based so thank you for the suggestion but I’m hoping my gp can find something to help with the pain. I am getting a grip on the high output but my body is still battered from it and it’s just not coping I am sick of being in so much pain 24/7 I’m very upset and lost with it all. I’m happy to have the bag so that’s one good part but I had such high hopes to be in less pain not more so it’s very scary but thank you for taking the time to reply to me xx

[Joeyskin]

Have u tried tramadol this is morphine like but not, this is used in patients that can't tolerate morphine, you really shouldn't have to be coping with this much pain after 3 weeks. Have you spoken to a nutritionist aswell and keep a diary find out what causes wind and not .I would suggest exercise but with your back it's impossible. Sorry if u think I'm bombarding u with ideas but I'm racking my brains trying to help you. I wish you all the best and I hope everything sorts itself out soon xx

[MyStar86 in reply to Joeyskin]

Thank you so much and no it’s nice that you are trying to help 😊. I have tired tramadol and it gives me heart palpitations and panic attacks which means I can’t sleep so that one’s out for me 😞. I don’t have wind with it and I’m barely eating I’m living off Rice Krispies with my nutritional shakes that I have to have due to my low weight plus I’ve been having plain white rice and white fish so I’ve stuck to what I’ve been told to eat and the odd ginger biscuit when I’m feeling sick. I have the gp tomorrow so I’ll see what she says I’ve been trying codeine but that’s not touching it, I have been trying to have two little walks a day as I’m so worried about my back as I have osteoporosis anyway but my back has never felt this bad. I don’t know if the gp will be much help but I managed to get a private pain management appointment for the 4th December. Just very draining I’m basically trying to sedate myself to get any rest and get through the day it’s very upsetting but I’m trying my best to get help and not totally fall apart.

Thank you so much for all your thoughts it is very kind of you xx

[powderpuff]

Hopefully, by now another week or so into recovery you’re feeling a bit brighter?

Be a bit patient with yourself, it’s still fairly early days - according to the NHS website 6 - 8 weeks for keyhole surgery to settle.

A thought about pain relief - you may find the ‘patch’ alternatives more tolerable with fewer side effects.

[MyStar86 in reply to powderpuff]

Thank you for thinking of me mentally I’m doing better as I’ve double the dose of codeine which seems to of helped slow the crazy high output down as well but I am speaking to a pain management specialist on the 4th so I’m hoping they can do something with patches as that would be better for me all round. I have other issues going on at the moment as well but working with the stoma nurses on that but I’ll need another surgery so I’ll discuss with my surgeon in a couple of weeks when I see him for my 6 week follow up.

They do say ileostomy recovery is 3 months and mine will be tough as I was so weak before at a very low weight and I’ve been through so many abdominal surgeries in a short space of time so my poor body is in shock. I’m trying my best just need to get some proper pain control so I can recover properly with actual rests xx