Hello all I've had crohns and stomas since 1976 I now have short bowel and an Ileostomy

[SoFedUp2023]

I've had crohns since 1976 and my first resection june 1977 colostomy formed I spent six weeks in hospital because I couldn't accept mt colostomy at first I wouldn't touch it or change the bag, then after five weeks I thought I've got to accept it and get on with my life, after 46 years I've had five more resections last one 2015 where I now have only 4ft of small bowel left no colon and ileostomy struggle day to day with high output and dehydration problems, poor appetite, I have now been diagnosed with Angina, Chronic Kidney Disease and Pre Diabetes. I've just found this site and joined this support group so big hello to all and I hope I can be of some help and maybe get some help.

[Helloit]

Hello and thank you for sharing your story I’m sure from your experience you will have lots of information and support to share

[jackdup]

Hello and welcome to the site. Seems you have more than your fair share of health issues. I hope you are managing it all as well as can be expected.

[MyStar86]

wow it does sound like you have been through a lot and thank you for sharing! I had my ileostomy since the end of October this year and I have really struggled with high out put the same as you I am so upset and feel really lost I do all that I’m told and live off the awful white diet with supplement shakes but still awful output and so painful all the time it’s given me this terrible burning nerve pain in my bowels I feel so sick with it all the time my body just won’t adjust to it and I think I have it under control in the day with diet and Imodium then it goes mad overnight and I’m left with the burning pain all day with my guts sloshing around I hate it. I wish I could go back in time as I feel so lost and confused now any advice would be amazing thank you xx

[SoFedUp2023]

thank you for you replies jackdup and MyStar86

Like you MyStar86 my output is quite low from waking up to around 3-4pm then whoosh lots of output even during the night I get up twice to empty stoma bag it’s very challenging as my profile name says I’m so fed up with it all. I have to looking for things to do to take my mind off it, I joined a computer club one night a week I learnt how to strip a computer down and service them. Read a lot Lee Child Jack Reacher books 29 so far read them all. I’m on 7 loperamide and 2 codeine four times a day Lansoprazole twice a day helps a bit with gas and gurgling was on Omeprazole for it 8 years until they stopped working now on Lansoprazole if you have nausea ask Dr for Cyclizine it’s anti sickness seems to help. For the pain try a hot water bottle rest on belly it will ease the pain. If I can help with anything else I’ll help if I can.

[MyStar86]

thank you so much for your advice and sharing as it’s not fun is it I hate it I am not the person that I was before the surgery I am sad all the time and with my hrt (I had a total hysterectomy last year when I was 35 for endometriosis) the high output is stopping me from absorbing the tablet side of my hrt so emotionally I’m a mess. I just can’t handle the burning as the rapid output has caused so much nerve pain it’s horrible I can’t escape it and with all the cramping it’s destroyed my back….i also have osteoporosis so I can hardly walk very far and pre surgery I lived for my long term walks to keep me sane.

I have been put on buprenorphine 10mcg patches and pregabalin for the nerve pain I also have to take codeine and Imodium however the pregabalin totally destroyed my guts and the output went mental I couldn’t get it to calm down I was screaming in pain from the burning so I had to stop those and I haven’t recovered since. My pain specialist isn’t back till the 8th of Jan and his secretary is also away so I can’t even book an appointment. The patches on their own have given me terrible insomnia but the output keeps me up anyway and all the cramping and burning up it’s crazy.

How do you find your diet? What sort of things do you manage to eat daily? Thank you for all your help it means a lot.

Oh my stoma nurse did recommend Omeprazole but I can’t take it with my osteoporosis as they block calcium absorbtion.

I’m glad you have been able to find things that you are able to do and getting on with life I feel like my life has ended it’s so upsetting I just can’t get over the pain I wouldn’t care about the output if it didn’t cause this evil burning because I can’t even use a hot water bottle to ease it as it just burns from the inside out xx I’m sending big hugs because I know I need them and very grateful for your help

[SoFedUp2023]

Your not having it good yourself I feel for you. I keep saying the same wish I’d never had my last resection, the surgeon tried to save some colon but couldn’t get it to come to the right side they couldn’t use the left side has I had a rare skin cancer where my previous stoma was they had to cut the skin away. I’m on low fibre diet which is so bland I was a good eater before now my appetite is poor I have a couple of meals I tend to have a lot Mac n cheese, battered chicken and bbq fries, chicken burger with shredded lettuce de seeded and skinned tomatoes. I have Chronic Kidney Disease, Angina and now pre diabetes all diagnosed in past year. I also have back problems compressed discs in lumber area. I bought a treadmill to try and keep some fitness and a TENS n EMs machine to ease cramps in legs due to dehydration problems. I have days where I think I just can’t be bothered and want to stay in bed but then I think I’ll just feel worse thinking silly things so I get up to do things around the house. I know your probably thinking will this get better, it will, once you’ve got the right regime of meds etc. things will pick up enough to have a bit better life. Sending you hugs stay strong if nothing else this illness definitely makes us stronger.

[MyStar86 in reply to SoFedUp2023]

Thank you I wish I could stay in bed but it even hurts to rest as I have to throughout the day have lay downs due to my back but with the burning and cramping it doesn’t ease laying down which is really upsetting me just feels like there is no escape and I’m scared to go to bed at night as I end up having terrors due to burning up and being in pain. I’m the same on the low fibre basically white diet but I don’t find it helps I don’t eat anything that could cause issues but it seems like my body just can’t adjust to the surgery and hates having anything in it as I never get a moment where it isn’t hurting cramping or burning. It’s nice that you say it will get easier but it just doesn’t feel like it I feel like a freak as you hear lots of people who have ileostomys and then they get back on with life as normal so I feel like I’m being weak or I’m doing something wrong why it’s so bad. My gp is very patronising and no help my surgeon is amazing so I’m glad I have him and the pain specialist but it just all feels a bit hopeless now. Each day I have to come up with a one. To see what might help and when it doesn’t I just get so upset and not being able to rest is killing me however I’m hoping the pain man can get something to help me rest as the pregabalin was good for that but the trauma it has caused me I’ll never touch that again and it’s made me nervous of trying new meds but I will as I really need help.

I have little walks just down the road to keep me sane and get fresh air but it makes me sad how I used to be able to do so much more I would be travelling to London to see my consultants and I live down in Dorset so it was a long round trip and now I’m scared to just get in a car as a passenger as it hurts my back and tummy so much. Oh if I had a Time Machine I would not of had this done I know it had to be done but I hate this life as it’s not a life it’s survival mode.

It’s nice to know I’m not alone as I hate hearing all these miracle stories it just upsets me and makes me feel guilty or a freak for not being well and being worse than I was before the surgery.

Thank you for your kindness and support as it sounds like you have so much going on my heart goes out to you it really does I wish I could help but I can’t even help myself xx

[SoFedUp2023]

your not a freak there are more than you think in the same boat it’s a horrible illness to deal with day in day out. As you know I’ve been dealing with it for 46 years really hoping you can get the pain sorted out as soon as possible. Love n hugs for you xx

[MyStar86]

thank you that means a lot and I hope you can too as I understand your name being so fed up as it isn’t an easy life battling everyday no one truly understands unless they go through it themselves so thank you for talking to me and sharing some of your story. Thank you for the hugs I am sending some right back too you with hope for the new year xx

[SoFedUp2023]

it’s been nice chatting with you too here’s hoping for a better new year. Any time you want to chat I’m here. xx

[MyStar86]

Hello again, I hope you are doing ok I just wanted to ask over the years have you ever been prescribed Ondansetron? It’s an antisickness medication but it can also slow the gut transit so I was hoping it would help with both my sickness and high output especially in the night as I take codeine in the day and I’m on buprenorphine 10mcg patches (they don’t seem to do anything except give me insomnia) however I’m really struggling with the pain from my stupid guts working to fast so I wondered if over the years if you had been prescribed Ondansetron or knew of any one that had with hopefully positive outcomes. Thank you again for all your help xx

[SoFedUp2023]

MyStar86 I have had Ondonsatron in the past for sickness did nothing for me Cyclizine is the only antisickness med that seemed to work for me. I have high output and I’m on codeine and loperamide for it but because I have short bowel my output is still high especially from around 4pm onwards each day. Have you tried Loperamide?

[MyStar86 in reply to SoFedUp2023]

Yeah I have but it does stop it but causes awful tummy pain and then when it wears off it just goes mad output wise i find the codeine better but it seems to go mad in the night when all the drugs are out of my system the worst is about 3am and the through the morning but I take a codeine as soon as I get up to try and help the pain and slow it down but I can’t take codeine in the night as it keeps me awake so I was hoping got an alternative which is why I was hoping that Ondonsatron would be a good one to take at bedtime and see if it calms it overnight saving me the battering but thank you for letting me know I’ll give it a go as it might work for me. I find only Metoclopramide works for my sickness but it’s a prokinetic so I can’t take it with rapid bowels 😱 it’s all so confusing xx