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How did your UC get diagnosed?

(10 Posts)
lovesmycake Thu 27-Apr-17 14:58:54

I was diagnosed within the space of a month but it was quite traumatic for me and im still struggling to come to terms with all the events that surrounded it. I'm a fairly recent arriver to auto-immune as I was diagnosed in January last year but from the little I have read on here it can be really difficult to get a diagnosis usually so I was wondering if this was the case.

I guess i'm hoping that with more information I can look on what happened to me in a more positive way as in 'i was lucky to get a quick diagnosis' which might help me get over it a bit.

I hope this isn't insensitive as I can imagine anybodys journey to a diagnosis is painful however it happened.

LineysRun Thu 27-Apr-17 23:50:13

I'm afraid I don't know very much about ulcerative colitis, and it must be very difficult to deal with the condition and that diagnosis. I would definitely embrace the medication, though.

LinaBo Fri 28-Apr-17 00:08:33

I was lucky too and got from the first GP appt to the sigmoidoscopy that diagnosed it in 3 weeks. My GP said he thought he knew what it was on the first appointment, then I came back a week later with further symptoms and he said he was 99% sure. Sigmoidoscopy confirmed his suspicions.

I took me a long time to come to terms with the fact that I've got UC and it's not going anywhere. I had counselling through nhs talking therapies which helped me deal with the anxiety that followed my diagnosis.

I'm ok with it now, 7 years down the line, and consider myself extremely lucky as I get along with my medication very well and hardly ever have flare ups. I have worked out what triggers my symptoms and avoid eating or drinking anything that upsets my digestive system.

All the best in your journey flowers there are some great groups on fb if you're on it - I can get you some links if you're interested.

BuggersMuddle Fri 28-Apr-17 00:19:33

When I was about 27, I came back from a holiday with horribly unpredictable toilet habits. I had previously been regular as clockwork (although looking back a few weird things - like my suspected appendicitis - ended up being digestive related, but were written off as 'one offs').

I spent two years being told all kinds of shite like:

- You have IBS
- You can't cope with stress (I had one previous incidence)
- You are getting older and just need to cope with bodily changes

Well eventually I was passing blood, had private medical and convinced my ultra- leftist arsehole GP to refer me privately. (Previously she had refused because not warranted even though I could pay). Had an endoscopy which showed pancolitis and went into treatment from there. It's years on but I still feel some anger for early 'suck it up' docs, for reasons....but I won't hijack.

It sucked. I was treated like a baby who couldn't understand why getting older meant I wasn't in total control and was in pain. If you think you might be passing blood (including coffee grounds type), then that helps with a referral. I was majoring on pain and inconvenience, which got me nowhere.

Anyway, I have had a couple glasses of wine tonight, so probably rambling & will stop. Feel free to PM. I have UC and went through a bunch of stuff getting diagnosed and also with treatments - more than happy to share my experience FWIW.

lovesmycake Fri 28-Apr-17 09:53:25

LinaBo - I would definitely be interested in the facebook groups you mentioned I do think I have my head in the sand about it all because of how upsetting i find remembering my time in hospital.

BuggersMuddle - Please hijack away. I go over the events of what happened over and over in my mind and sometimes think if I talked about it more I could let it go.

I was over in the UK for my grandmas funeral and got taken to the hospital with appendicitis I had surgery to remove the appendix got discharged from hospital and then readmitted he next day. I think the surgery really complicated things for me as the consultant in charge of my case had it in his mind that i must have a post-operative infection so pumped me full of antibiotics and sent me for ultrasounds every couple of days. Basically i spent a week like this in hospital I was vomitting constantly and had extreme diorrehea with blood. I was on morphine for the pain, paracetamol, rotating through anti-sickness drugs (I had an allergic reaction to one drug that was pretty scary) IV fluids. On oxygen because my SATS were low (now thought to be the amount of pain I was in preventing me from taking a deep breath) hooked up to a heart monitor because I was so dehydrated that my heart was beating at twice its normal beat.

I was left like this for a week surrounded by sick bowls, in soiled bedding and in a gown soaked through with breastmilk because I had left my four month old at my parents when I was first admitted and I had only been allowed to use a breast pump once for 20 mins.
Constantly belittled evertime i asked the consultant to help me. I did at one point ask him if it could be colitis and he asked me i there was any family history I said no and he laughed it off and said I probably had D&V. Honestly if I ever saw that consultant again I would struggle not to punch him, he was so dismissive and demeaning and no matter how often I go over what happened in my mind I cant work out why. At this point my parents and brother who visited me daily thought I was dying and flights were booked for my husband and son to come over and say goodbye (I am aware that probably sounds extreme but at the time that is how it felt)

Eventually (unknown to me) the nurses went over the consultants head to the head of surgery and told him I was suffering and needed an intervention. The head of surgery ordered an urgent MRI the results came back Pan-Colitis which was so severe that my entire colon was completly smooth as it was so swollen.

The rest is pretty simple I was moved to a fancy private room started on steroids only had the head of surgery and gastro on my case, I never saw the initial consultant again. I had to spend another 10 days in hospital essentially recovering from the effects of mis-diagnosis bfore I could go home to my husband and children and my treatment since then has been very straightforward.

Apologies for the essay I struggle a lot with flashbacks and going over and over and over it in my mind so I have essentially buried it since last year, I guess starting to write it down the flood gates opened a little there!!

All in all my diagnosis took just a few weeks and when I hear of it taking years or more I can't imagine what a fight that would be, it felt so demeaning to be dismissed in those weeks and it must take real courage to keep going back to the doctor month after month until you get the right diagnosis.

LinaBo Sat 29-Apr-17 04:55:06

Hi loves - it's been a while since I visited my groups and it seems I'm now in only one of them, but this is fab, everyone is very supportive and I am sure loads would be happy to tell you their story smile It's a brilliant place to talk about any aspect of UC.


(I just disregarded my own piece of wisdom up thread and had 2 half glasses of wine, now I'm suffering and awake at this ungodly time sad)

AuldHeathen Sat 29-Apr-17 17:52:21

I don't have UC but my late mother did have. It was the late 60s & early 70s and she was really ill. Kept going back to GP and getting sent away 'It's just something you caught abroad' which wasn't any reassurance at all. (lived in Africa for a few years) She was scared she was dying. It's quite sad people are still having problems getting diagnosed.

MegBusset Wed 10-May-17 22:29:57

Lovesmycake that's horrific flowers I'm not surprised it's taking you a while to get your head around.

I was diagnosed in my late 20s, it was quite straightforward really, I had self diagnosed with Dr Google, then the GP referred me and I had a biopsy and sigmoidoscopy to confirm the diagnosis.

I started out on prednisolone but I hated it and it made me feel wretched; then I gave up wheat and dairy, which kicked it into remission for a couple of years. These days I do eat wheat and dairy, but not too much; and I use Pentasa for flare ups, which I find very effective. I consider myself lucky so far, as I know people who have been much iller with it.

LetsSplashMummy Wed 24-May-17 10:15:19

Mine started when I caught amoebic dysentery when travelling and never got back to normal. Therefore I had a bit of a circuitous journey round tropical diseases before being diagnosed - which was understandable. I was only in my late teens though and it was too easy to be totally in denial until it was completely out of control. I think the fact you are processing it all and taking it seriously now is a really good sign.

I think it is hard to hear that you have a permanent, chronic condition when you are in the absolute worst point of it - I have RA as well and it was harder to cope with as it was diagnosed quickly while I was in agony, so I thought it would always be like that and linked the condition with pain. It isn't by any means - in fact pre-diagnosis is as bad as it gets, but it takes a little while for your brain to catch up and believe you. Be kind to yourself, you will get there and you are allowed to be gutted.

I don't know if it helps but I've had the surgery for UC, which is your worst outcome, and my life (bowel wise) is very easy and illness free.

noodlebum Sat 03-Jun-17 17:20:38

I got diagnosed just over 2 years ago, where I suddenly got rather ill and lost a lot of weight, going to loo 10 times a day and very tired. I was given steroids although I hadn't been diagnosed with anything yet. No one in my family had a history of Crohn's or UC. While waiting for a colonoscopy date, I went to my GP again and they suggested I go to hospital. This was all over a period of maybe 3 weeks?

Still in hospital a week later, after a colonoscopy and getting the results, it turned out I had UC and my colon was close to rupturing, so had emergency surgery to remove it and have an ileostomy and stoma. This was done through open surgery, so I have a lovely long scar from above my belly button to my crotch. I ended up in hospital for 5 weeks due to various issues while in hospital, mostly due to being so ill before I had the surgery. They said I could have a reversal in a years time though and be back to normal.

A few months later, when a wound from my surgery wasn't healing over, it turned out I still had UC in my rectum and the remaining stub of colon, so a year after my first surgery, I had the rectum and remaining colon removed, and anus sewn shut from the outside, making my ileostomy and stoma permanent. It was either that or still have the rectum and colon removed, but have a J-Pouch, so I was used to the stoma and didn't want to try and handle another new way of going to the loo haha! grin

It's sometimes annoying, life with a bag, but I go on all my rides at theme parks (with a stoma guard), have the same job still, getting married next year, and life is pretty good!

I agree with you LetsSplashMummy, some say the worst outcome is surgery but I don't feel ill at all now, on no medication etc. so for now it seems the best outcome! smile

Of course, there's other extraintestinal symptoms that can appear e.g. arthritis, skin problems etc., but I don't seem to have any yet touch wood.

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