Three and a half years and major surgery later ... They tell me I've been misdiagnosed!

[Katyrah]

A brief background - 3 and a half years ago I was diagnosed with ulcerative colitis; after a lot of hospital visits, tests and tons of horrible medication my consultant suggested surgery - an ileo anal pouch - this us where by large intestine would be fully taken out, a pouch made inside my body from my small intestine, I currently have a temporary stoma before the second op to reverse it where I will be using the pouch. This is a very serious op with a lot of risks, my decision was made on the facts that a- my UC would be cured b-no more horrible medication and c-only a 3% chance of failure and having a stoma forever.

The other day my consultant told me I do not have UC, I have Crohns. Very similar, granted, but very different diseases. He constantly repeated there was no way they could of known; I do no believe that 3 different hospitals did not pick up on this, especially as (now I have researched crohns myself). I have had other symptoms of crohns since I was 8 (I am now 22.)

The implications of my operation mean it will not cure me, crohns can come back anywhere in the digestive system, I will still be on medication, and the risk of failure has been increased to 50%. I am heartbroken, I have put my body through major surgery for nothing. The nurse admitted to me that with the correct diagnosis I would of only had a section of my large intestine removed; also drugs they use for crohns and not for colitis may have worked so I would of never got to the point where I needed surgery. She also said they don't preform this type of surgery on crohns patients; purely because it does come back and it would be pointless. Everything I based this surgery on has now been blown out of the water. The consultant has put me on anti depressants for 'reactive depression', because of this news.

Family are advising me to seek legal action, what are your opinions? Do I have a case? Morally should I sue the NHS? I just can't believe what's happening at the minute, any advise would be greatly appreciated!

[edam]

Bloody hell, you poor thing. That's appalling. If you want to sue, I'd advise you to call a good medical negligence lawyer asap as Ken Clark is going to remove legal aid from clinical negligence cases, so it will be impossible to seek redress unless you are a millionaire. Leigh Day and Irwin Mitchell are firms that do a lot of this work, might be worth looking them up for starters.

But I'd also call the relevant charities (there must be some) and the Patients' Association for advice first, talk through exactly what happened, what you were told, when, by whom.

[bellavita]

You poor poor love.

I am pretty certain I posted in your last thread with a link to my DH's email? Was that you?

Gosh, I don't know what to say

DH at the tip at the mo, I will ask him his thoughts when he gets back x

[giraffesCantZumba]

Oh that is awful, sorry this has happened. Take some time to think about what YOU want and what would help you.

[edam]

suggest you call the National Association for Chrohn's and Colitis and see what they have to say about your surgeon's claims that 'there was no way of knowing'.

[bellavita]

Spoken to DH

He said between 10 and 15% of cases are like yours. He said there will be nothing you can do. It is really hard to tell both diseases apart and quite often it is only when the colon is taken out is it analysed.

I am sorry.

[edam]

Oh, that is sad.

Katy, did your surgeon not explain this to you before you went ahead?

[Katyrah]

Hi thanks for your replies!

Yes you did Bella - I did what you advised and my stoma nurse put me in touch with a few people in my area who have stomas too - it's been useful!

I just wasn't expecting this at all, my recoveries been far from ideal and I'm just gutted it's happened, just wish some doctor some where would have checked my medical history and thought to test me for crohns! I wasn't even aware there could be a chance of me not having colitis!

I doubt I'll sue or do anything to be honest, I was just so looking forward to being medicine and pain free and now I'm not and I just keep going from
So angry that this happened to really sad and upset!

[bellavita]

There is no test Katy...

DH said it isn't a certainty you will have any problems. He says you are right, the rate has gone up to 50%, but that still does leave 50% where nothing changes. Sometimes, Crohns is just confined to the colon, so once that is out then you have got rid of the disease. He says a lot of people live normal lives with an ileo pouch and Crohns.

[chocolatehobnobs]

Hello,
I'm sorry to hear that you are upset and worried that this will start up again when you thought you were cured. I currently see lots of patients with colitis in my role as a colorectal surgery trainee. The diagnosis of ulcerative colitis is primarily based on the appearance of your rectum and colon at colonoscopy and the pathology report of biopsies taken. In my experience, it is quite common for reports to say 'non specific colitis, probably Ulcerative colitis and in these cases it is a case of your clinican putting the whole picture together, there is no other specific test to tell the difference.

As I'm sure you know UC generally affects the rectum in a major way so I suspect you were quite unwell in this way when you were diagnosed. It can be very difficult to tell the difference. As Bellas DH says Crohns can be limited to the colon. I think this must have been the situation at the time of your diagnosis and may be in the future. In any type of colitis where you can chronic severe inflammation, it is a risk for cancer so at the least the area which was severely affected has been removed. I'm sure that the doctors looking after you would have thought carefully before offering you this type of major surgery and will be very disapointed for you that new problems or evidence have come to light making them think this may actually be Crohns.

I do understand your anger and confusion and I hope this was helpful information.

[Katyrah]

I'll just have to hope! My nurse has said they can't really say how I'll react because it isn't an operation they do on crohns patients so they don't know. I think it's just a shock at the minute - could I be really cheeky and ask for your husbands email address again? He seems to know more about what to expect than my doctors!

[bellavita]

[email protected]

her other/better half :)

[Katyrah]

Thanks Chocolate; it is a relief I suppose to hear that crohns can just stay in the colon, I hope I am one of those people! My UC (crohns? I don't know what to call it!) was all really low down and I know I was really ill so something had to be done! It's just like getting a whole new disgnosis; I remember how devasted I was when told I had UC, and this Crohns diagnosis came completely out the blue - I only went in for a routine chat after my op! I'll get my head around it eventually I guess, just have to hope my reversal on the 16th goes to plan!

Thanks to everyone for listening to me rant :)

[eicosapentaenoic]

Katyrah: We are similar with my teen's eyes.

Most effective has been developing good relationships with consultants who can treat, refer, rethink. Also developing good relationships with helpful individuals in clinical team, and non-clinical, for direct advice, and hints. While being sensible and rational, let them see your fear, give them the opportunity to find solutions and explain the thought process. Ask the questions they're avoiding to different team members.

Even wrote letters to/chatted with previous docs years later, 'thought you might be interested to know we have progress on diagnosis...', in case we needed them again, and in humility they eg asked for further info for next patient. Think we all learnt something...

Re Patient Liaison. Swing by for 'advice' if you ever want a near-miss/misdiagnosis to appear on hospital stats, no hint of complaint jeopardising relationship with docs. Doesn't hurt anyone to get the situation lodged with them in writing, just tell it as it is.

Re family/medico-legal. Easy for them to say but getting good on-going supportive treatment for you is the priority here. Medicine isn't really like this, not a dodgy boiler, there's an element of voodoo, sorry, skill and judgement - meant with a lot of love and respect, chocolatehobknobs! A historic misdiagnosis or failure to test can be to your advantage in getting good further investigation with current unit, who sound unusually supportive, kind and honest.

Medico-legal complaint is a nightmare but if you ever feel you might need to, cover your history now with parallel records and dialogue with Patient Liaison. It's a question of accessing best-available further treatment and support right now - wish you good progress.

[A1980]

It is really hard to tell both diseases apart and quite often it is only when the colon is taken out is it analysed.

So sorry for what you have been through.

But if this is true the the misdiagnosis may well not be negligent. If the misdiagnosis wasn't negligent then there will be no clin neg claim. Start with a letter of complaint to the hospital. See what they say.

[bellavita]

Katyrah - did you email DH? He hasn't mentioned that you have.

//[email protected]