Hi, my name is Sonnyboo17! I am a female with a permenant end Colostomy

Sonnyboo17

I am a female with a permenant end Colostomy ... this came about after 3 major abdominal operations, my last in 2017 was over 10 hours long in which I had to have a large pelvic mass removed as well as an emergency Hartmann's procedure ( Stoma). My bladder was also fused as well as my bowel to my pelvic area due to stage 4 endermetreosis. Thankfully my bladder was saved by the skill of my oncology surgeon, so I only needed 1 bag,  but left me bladder incontinent.
Most of my large bowel was removed and the mass ruptured leading to a very large blood transfusion. I was very poorly in hospital for 3 x lots of over 3 weeks= 9 plus weeks in all between July and December 2017.
I have problems now with a large parastonal hernia on the stoma, which in turn causes bad back pain, plus crippling mucus pain from my rectum (which is common in Ostomates), this can happen once a week or once every 2 weeks leaving me housebound for up to 3/4 days. I am also diagnosed with P.T.S D. and O.C.D. by a Prof of Psychiatry and my GP.  This came about as my Stoma resulted from medical negligence. (After my 2013 sub total hysterectomy the surgeon had to abandon the original total hysterectomy operation, as my organs had fused together due to endermetrial adhesions... I was then prescribed Oestrogen only HRT. My GP at that time  entered the wrong operation code in my medical records stating I had had a total hysterectomy, as never checked the hospital discharge notes stating otherwise. I should have been prescribed Oestrogen/Progesterone HRT as the hospital advised after my s/t hysterectomy. 
4 years on I was hospitalised with campylerbacter I got from a supermarket sandwich. This sandwich in fact saved my life, as on being admitted by emergency to hospital a scan showed up a very large Pelvic mass. The Oestrogen only HRT had fed the Oestragen dominant and Oestrogen dependent Endermetrial hyperplasia I had. Gp had ignored notes in my medical reports after my 2013 hysterectomy that stated "adhesions" were the reason my hysterectomy had been a sub total one. Plus there was a chance of endermetrial deposits being activated from Oestragen. 
4 years on this is still in the legal process,  about to be lodged in court under medical negligence. 
I am in constant pain. I have a high output, and as with most Ostomates I cannot control the output. I have very disturbed interrupted sleep as bags burst, so you have to get up shower, strip and change bed, or just have to get up up to 4 times a night to empty bag. 
In my case along with most people with Stomas we find we have support from our Stoma nurse team...but none to support our mental health decline and trauma as there is none available. My GP fast tracked me for 2 courses of CBT and 1 of EMDR but sadly these did not work for me.
I have since been diagnosed by a Professor of Psychiatry as having "unacceptance trauma"- due to my Stoma not coming from disease such as Crohns, bowel cancer, IBD...but medical negligence. I have panic attacks, flash backs and continuous distressing nightmares, so most days the exhaustion is overwhelming from lack of sleep and hernia/back pain causing discomfort in  sleep patterns. 
I, like many Ostomates live with this life changing and life challeging condition with little or no mental health support. Many folk with a Stoma will just become extremely isolated due to the "stigma" of having a bag that collects their Poo. Many won't talk about it and feel embaressment and shame. Social situations become upsetting, and every trip away from home involves locating disabled toilets and carrying around a large bag of supplies/spare clean clothes.  If you are lucky enough to have family support you can struggle on. But there are so many who perhaps may live alone that do not have any back up support/care. 
Those with hidden disabilities do get a very raw deal. We are entitled to use public disabled toilets, have the emergency toilet pass card, and a pelican key, but when the public see us in there,  what I have been called by 1 irate lady as I exited a disabled loo after having to clean myself up at the wash basin was that I "looked normal"- which is both misinformed and an insult to all disabled people...We are normal! Those with Stomas however do not have the wheelchair that the logo on the disabled door dictates....our bag and scars are hidden under our clothes, and for the irate public to see a person "walking" out from a disabled toilet often results in that Ostomate receiving verbal and often physical abuse. 
This needs to change. 

Only education and awareness will enlighten those who do not understand what a Stoma is. Ostomies happen to babies, toddlers, children, teenagers, as well as adults....it's always seen as an "old person's thing"- which is wrong. 
A Stoma saved my life, but it also ended my life. It is permenant, and my physical and mental health steadily decline, it won't improve. I can only accept it, but never love it. What other option is there? It was "a bag, or a box"- However I do want to be treated with dignity and respect, and although we are in the year 2023 this sadly is lacking. 
When newspapers made big misinformed headlines a couple of years ago regarding the Burnley man who wanted to be allowed to die rather than have a Stoma, which disgusted him, as he said would stop him from ever finding a partner, (his wishes were granted by a High Court Judge.) is it any wonder that Stomas are seen if necessary that they would be the "very worst possible outcome"-! Indeed even my oncologist said these words to me. Hardly encourages life after an Ostomy. 

I have been privileged to meet some amazing brave warriors on the Ostomy sites I am on. The fact we have survived all we have gone through, and come out the other side is proof we are not quitters. But we need the rest of society on on our side. We need to talk "Poo and bowels," and not be ashamed of what saved our lives. 

#I may have a hidden disability but I am not hiding.
# Not all disabilities are visible.
#Stomas save lives.
#End the Poo taboo.

Thank you for reading my Stoma journey. 

ShirleyW

Thank you for your very informative post about your Stoma journey.  It was extremely enlightening.

I wish you good luck and happiness for the future. 

Hannah_Alumni

Hello @Sonnyboo17

Fellow stoma friend here 👋 I have an end ileostomy  

Thank you for sharing your story. I was once in hospital and naively asked if a fellow patient had crohns or colitis as I always forget there are so many other ways in which you can come to need or have a stoma.

Are you able to have the hernia operated on? I hope they manage to help you with pain relief either way. 

You are so strong after being through so much. I'm glad you went down the legal route, and I hope you get the outcome you want 🤞

With your output, do you find you have a higher thick output? sometimes thickening it with marshmallows and jelly babies can help, but I understand it isn't a fix it all for everybody. I have nights where I am up all hours emptying too. 

For mental health support I turned to private help, the NHS is still just too backlogged. I also use the headspace app and there are amazing organisations like SHOUT who are a 24/7 texting service. I like them because it feels like I am more in control. I was very lucky to know I was having my stoma, you find people in the ostomate community find it harder when it is a stoma through emergency or in your case, medical neglect. 

Social situations are hard, I'm still building my confidence after my last stoma surgery and having gone through covid. I have a local group near me for people with stomas, have you thought about seeing if there is a local group in your area? I end up taking a backpack everywhere for my supplies! 

Oh the dreaded person who mouths off at the disabled toilet. I had someone say to me, "what were you in there for you're not disabled". I pulled my stoma bag out my jeans and said "is this disabled enough for you". They walked off! I think having the confidence to confront the stigma is very hard for those with hidden disabilities, as, like you said, we can get a very raw deal. 

Stoma's do save lives, I felt really sad you said it ended yours. They are not always easy to live with, and I hope you get better support for yours and for your hernia, so you are not in so much pain and can live. I grew to love mine, I don't think I'd be here without mine. I also treat it as I see it, it's a tool. It enables me to get up and get out more than I could before. Like you I have days where I can't but I was completely housebound before so it's a better change of pace.

We need to talk "Poo and bowels," and not be ashamed of what saved our lives. 

I agree with this ^^^ 100%

Just to let you know, I popped your post into our Rare, Invisible and Undiagnosed Conditions section of the forum, as I would love for more people to read your story. 

I hope to see you more on the community! 

rubin16

I have an ileostomy through crohns disease and I am quite releutant to tell anyone at first, it takes me a while before I will tell people. I also have high output no matter what I do so I have those nights where I'm showering at 3am and changing sheets because of leakages and have now got into a routine of waking up every 3 hours to go toilet. This is my second ileostomy after having my first when I was 20 and having it reversed and a few months later falling really ill again and having another stoma fitted. I was told there might be a possibility to reverse it again, however I have never persued this as I have managed to stay well while having a stoma and I fear that if I had it reversed I would fall ill again and last few times I nearly didn't make it.

I still struggle with mine though, and I have to plan where there is a toilet if I ever go out anywhere, and I have always feared telling people and finding relationships is hard. Also I have had many instances of really needing to use the disabled facilities and having someone say something when you exit. I hate those people.