Ostomy due to negligence - Seeking support and advice

Hi guys,
I am at the start of suing the NHS for clinical negligence and I'm wondering if I'm the only one who has had an ostomy due to negligence. (I had solicitors clambering to take my case on)

I had pain in my belly for over 7 years and pressure in my bladder and difficulty emptying my bladder. I transcended 2 GPs, who refused to scan the whole of my belly. My bladder got scanned and had a cystoscopy, but nothing was wrong with my bladder and the last time I visited my GP she still refused to scan me or investigate, blaming my mental health for my symptoms.

I had agonizing pain in my belly in May this year (it got agonizing really suddenly) and vomiting, high fever, and could not wee at all.
I called GP and out of four GPs and was repeatedly refused a doctor visit, was told to up my morphine (already on it for arthritis).

By Sunday, I knew I was dying and called my best friend who called an ambulance.
I was in the hospital for 5 days and they still did not scan me fully or investigate, they were going to discharge me on day 4 and my friend argued to keep me in.

On day 5, I vomited feces all over myself, and they finally realized I had a perforated bowel and now peritonitis and septicemia. They operated, made me an end colostomy, cut lots of bowel off.

I was in the intensive care unit on life support, fighting for my life for 11 days. They told my friends to say goodbye as I was dying of septic shock, but somehow I made it.

I had a terrible trauma reaction to my stoma, as it was such a shock, and as I had been sexually abused as a kid, whenever I looked at the stoma, it seemed to trigger off the abuse and I had horrific flashbacks.

I came home in July, after 7 weeks in the hospital, got evicted and was almost homeless.
My stoma never worked well, I was terrified of perforating again as the poo hardly came out and I had severe pain and internal bleeding.

I had hoped after almost dying they would believe me that something was wrong, but no, I had 3 months of being told it was all in my head and refused to be examined internally in the stoma.

Finally, my 7th stoma nurse put her finger inside and rushed me to the hospital as I had serious stenosis.
I've just had the operation to remove the stenosis and it was so much worse than they thought and I have lost lots more bowel because the 1st op was botched.

I got raging infections in both the stoma and the wound, after a nurse left me covered in poo for 2 days, even though I was yelling for help.

Then they told me I was in the wrong hospital as there were no doctors that knew about ostomies. They packed my bags for a hospital transfer, but a bed never came and I was taken off antibiotics halfway through a course by a junior doctor.

I was so scared in there that I discharged myself and at home have now got treatment for the infections and have actually been examined.
I didn't even meet the surgeon before or after, so have only just found out via the stoma nurse that he tried to make me a better stoma with a proper pip to stop the leaks but couldn't as my insides were so messed up, so I have another stoma that constantly leaks, causing me emotional distress and meaning I can't go out for fear of leaking in public.

My diagnosis for the perforation, by the way, was constipation, and the excuse the doctor and hospital staff gave as to why they didn't scan me was I was too young to have any colon problems. (I can't believe I have a stoma and nearly died because of constipation)

I am left feeling traumatized and angry and cannot believe that such a catalogue of disasters that almost cost me my life have happened.
I do not trust the NHS anymore and am not coping with having a stoma as I already had M.E./CFS and arthritis, so was ill already and also have PTSD, a double dose now.

I pray I get this reversed one day as I am not coping and I pray that my solicitor will get me some justice and I want to stop this kind of negligence from happening to others like me, but I don't know how to go about that!!!

By the way, my city hospital and NHS doctors have been on Dispatches 3 times for flagging up negligence.

Peace, bluebell x

Sweet Jesus Bluebell!! I have had complications from all my surgeries, some done at the RSCH, but what you're describing is horrific. Having worked in mental health for more years than I care to admit to, I know how quick people are to attribute everything to your mental health rather than taking it seriously. If you feel the need to chat, please message me. I would be interested to know which surgeon you're talking about, but that's best in a personal message. I have a beef with one of them that I plan on complaining about with my GP's support once I am finished with my ops.

Trish

Oh my heart goes out to you, Bluebelgirl. Please do take up the offers of talking with people here. I know your situation is unique, but as regards the whole diagnosis and pre-operation time, I think you'll find plenty here who have had some of the same problems. I too had emergency surgery and ended up with a colostomy. It took four or five days before anything happened, and I had so many scans I was sure they thought I was having them on. But eventually, after having a CT scan on a Saturday afternoon along with a probe into my back, they took me to surgery. I spent a week in Intensive Care with bad peritonitis and shock. I know I suffered a relatively short time in comparison to you, though. But I've not looked back since, although like everyone here, I've had good and bad days. I really don't think most hospitals are prepared for this, but I know I was blessed with my consultant. I do hope your situation improves and you'll soon recover. Take good care, Colm

Hi, you deserve some kind of compensation for the suffering you went through due to clinical neglect. It seems like there are too many people on here who have gone through the same kind of neglect you went through. The horror stories just keep getting worse. It makes me all the more thankful for the wonderful care I got from all my doctors. I hope you get better soon both physically and psychologically. Donna

Thank you so much for the support, guys, and I will PM you tomorrow. Peace, Bluebell x

How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister

Bluebell... just read your tragic story. My heart goes out to you for what you have been through. It's getting so scary these days to go into the hospital when people put their trust in doctors. You are so lucky to be here to tell the tale. I hope you find peace with yourself and that you get your justice. This kind of negligence has to be stopped before it's too late. I wish you luck, Bluebell, in finding a way to bring this out into the open and make it public. You need this recognition. Take care, Ambies... P.S. Feel free to talk anytime...

Hey Bluebell, that stinks to high heaven, girl. And yeah, it seems to happen all over the world. Imagine, actually, I can't even imagine what you have been through at all. But I feel so pissed off, arrghhhhh. I hope you are getting the help you need. I know there are many ostomates from the UK on here that might help you out. I sure hope so. And yeah, I have heard some horror stories from our ostomy association, from our members, from small investigations that ended up with people having ostomies. I think it's very hard to sue in Australia, but I hope you get justice. You know, money isn't everything. Those doctors need their arses kicked big time. Their right to work would be a start. xxxxxxxxxxxxxxxxxxxxxxxx Send hugs to you, Bluebell. Wish you all the strength, hunny. You deserve nothing but justice all the way. XXXX MOOZA AUSTRALIA. XXX I'm so angry right now, I have to log off. Toodles XX

I can't find the words to express how terrible I feel about your situation. I truly hope justice is served and those responsible are held accountable.

I had a colonoscopy and then an ileostomy. I was in a coma for 2 months and lost all muscle. I was paralyzed and stayed in the hospital for 4 months. I received skilled care for another 4 months. The bag was on for 1 year and a half before I had a reversal done. The only time I feel better is when I eat, and now I'm gaining too much weight. No justice was done. I have to live this way for the rest of my life. It's not fair. In my state, you only have 1 year to sue. I wasn't well enough to meet with lawyers. I thought my family was taking care of me, but they were not. My time ran out. I was given pills of morphine, plus breakthrough pills of morphine for pain that couldn't wait until the next dose was due. They didn't tell me to take a laxative with the morphine. I didn't know. It started because I just needed something for pain in my back. Now the back pain is still there, plus the other problems.

Your story sounds so like mine. For years, I was told it was all in my head. Twice, I was let out of the hospital. On the third, they were still going to let me go home until my husband insisted on a colonoscopy. "You won't find anything," they said. The bowel was dropping to bits. I can fully relate to the hospital part of your pain. I have written all about my story 'PTSD'. It's too late for me to sue as it's been over 3 years. But you go ahead and sue. Hope all goes well for you. And if you do need to talk, I'm here. It may well help me too as I really do need help. I have to sort my head out. It's been going on long enough. Take care. x Diglet

Bluebell,

My story is not as traumatic as yours is, but I did have an issue.

I was admitted to the emergency room and diagnosed with "congestive heart failure". The treatment consisted of Lovenox injections, which are administered into the abdomen. In the process, they punctured my colon 8 times. Consequently, a colostomy was performed and I was confined to the hospital for over 3 months. My wife finally had to almost kidnap me from them and get me home. I saw an attorney, but it was too soon. By the time all the transcripts were obtained, the surgeon and the pathologist had "doctored" them up.
My attorney told me that he knew they had done this, changing the reports, because the text of the documents was too perfect. The end result was no case. I am somewhat bitter in that I figure somebody owes me for 2 years of my life. Even though I did have a reversal, there was no reason for me to have gone through the ordeal in the first place. They say that doctors bury their mistakes, and they almost did with me.

Hope you get your compensation and live well!

Hello Bluebelgirl,

I am convinced that my colostomy was as a direct result of medical incompetence with what should have been a relatively simple operation for heamorroids. Several operations later I was left incontinent and in increasing pain. I could not face more surgery so went for years managing this very debilitating condition until the pain was simply too great.  All too late to consider suing the NHS.     So when I hear stories such as yours it gives me heart as it feels as if someone is suing them on my behalf. (and on behalf of all those others who may have suffered in similar ways.  

Good luck with your litigation and with your future health.     

Best wishes  

Bill

Hi guys, thank you for all your kind messages and I'm so sorry for those of you who have suffered medical negligence too.

.. Staruk.. I'm not a full member so I can't message you first, but if you can, send me a PM and I'll be able to reply.

Hugs to you all, Bluebell x

I can't sue we only have a year, but there not going to let you win, besides the insurance wants their money if you do win and at last count my bill was over a million dollars.

They should give more time to sue because you don't know what else is going to come up. I have already had a kidney stone which goes with not having a colon. I thought I was going to die. They let me sit in the waiting room for 2 hrs. Vomiting, couldn't sit still, it was horrible, and I was sure it was something going wrong with my intestines again. I have no large bowel and almost all my small intestines. I get scared a lot, of anything that has to do with my body. I am self-conscious of the weight I have gained. Now you tell me, how can I gain weight when I'm crapping my guts all the time? Someone should pay. They have ruined my life. We had to go on a payment plan or bankrupt. My husband is supportive but gets tired of waiting on me and yells a lot. 4 months in a nursing home and 4 months in the hospital, and the nightmares I had during the coma I still can't get out of my mind. I pray that God will give me the strength to go on.

You have suffered a lot and need to have compensation. I had a similar experience to you and have been thinking about suing the NHS but just have not got the energy after being so ill. I was in intensive care for 2 weeks and in hospital for 5 weeks altogether after having an emergency ileostomy after I fell over onto a rock and ruptured my intestine where it had been resected after an operation for Crohn's Disease many years ago. The NHS did not believe that my intestine had ruptured and even when an ambulance took me to hospital no one did anything until I was nearly dead from peritonitis, septicemia, and multiple organ failure. They finally operated and my heart stopped on the operating table and I had to be resuscitated. That was in July 2009 and it is only since the last few months now in October 2011 that I have been able to be strong enough to lead anything like a normal life but having an ileostomy is really horrible and I felt suicidal at first and I am very bitter about the way I was treated by the NHS. I am due to have the reversal operation but am told the risk of dying is quite high so am too scared to have it yet. Good luck with the suing - go and see a solicitor right away.

Hi Cecille, God, no wonder you haven't had the energy or health to sue.. I really hope you're feeling better.
I'm so shocked to hear of others who were in the hospital and they missed bowel perf/peritonitis/septicaemia.. It's so scary!!
You know you have 3 years to sue in the UK??
I am praying for a reversal next summer, but it would be a major operation for me too as I have an end colostomy and have a lot of scar tissue.. I know I'd be petrified, but I'm willing to take the chance if I get offered a reversal.
You've been through a lot too.. I hope you do get the reversal. Bluebell x

Ps.. so far, the suing bit isn't too stressful.. it might be good for you to get it going.. it takes about a year apparently to build a case, so not much at all to do until then.
I'm just in the early stages.. have just been granted legal aid, so the next step is for the solicitor to apply for my medical records, and after that, I make a formal statement., but that will be a few months away