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Original poster

Doctor said

56 replies

Sienna333 · 28/12/2017 14:55

I almost certainly have UC based on abnormal blood and faecial calproctein test. I have to be referred for tests which I am terrified about and had already resigned myself to the fact I had this condition but where do I go from here? Will I still be able to eat/drink what I like? Will the diarrhoea and streaks of blood stop once I start meds? What are the side effects of meds? Will i still be able to work/Go out without worryingabout toilets? Will I start getting severe pain (I don't have any now). I cannot believe this. Was such a healthy person before all of this. I knew my "bug" in October was not just that. It went in stages sure but it lasted far too long.

OP posts:
Original poster
Sienna333 · 28/12/2017 17:54

1st stool sample done back in October came back ok.
Two new stool samples and blood test showed abnormalities

OP posts:
magpiemischief · 28/12/2017 18:06

The good news is, OP, that things should get better from here. You will get advice and treatments which make managing this condition better.

Lots of people live with this condition. You have had posters saying in their posts how it is possible to manage this condition and lead a full and active life.

Your anxiety about this condition is worse than the condition itself. So allow yourself to stop worrying about this condition at least. Is there anything all consuming you can distract yourself with? TV, books, a hobby?

Wolfiefan · 28/12/2017 18:26

Your health anxiety is making your response to this physical issue disproportionate. You need to address the anxiety. Before it affects your whole family (if it isn't already. Which I doubt.)

Original poster
Sienna333 · 28/12/2017 18:43

They are upset that they dismissed my concerns. It's a big thing knowing you have a condition for the rest of your life.

OP posts:
Wolfiefan · 28/12/2017 18:54

But not as big as your anxiety would have you believe.

magpiemischief · 28/12/2017 18:57

But worrying about a condition really won't help, OP. In fact it could hinder. You need to be positive in order to minimise the condition's effects. There are solutions which mean you can manage the condition. Spending your time worrying just makes everything worse and prevents you from leading a full life.

Original poster
Sienna333 · 28/12/2017 19:01

I just hope I can still work, go out without worry and eat/drink what I want without urgency/pain. I have stopped googling it all. It does no good to me reading how crippled with pain people are, how they can't eat what they want, how they flare up all the time and have no life outside their homes. All it does is terrify me. I have no pain now, I just hope it doesn't come on like some have said it does.

OP posts:
Jaytee38 · 28/12/2017 19:05

Firstly you need more than a blood test and stool tests to diagnose.

Secondly many many ppl live normal lives with colitis. Others would not know they have it.

Finally if you want advice from ppl
With inflammatory bowel disease go look up CCUK

Original poster
Sienna333 · 28/12/2017 19:16

Wirh my symptoms, results and doctors feedback it is more then likely though.

OP posts:
magpiemischief · 28/12/2017 19:26

Yes but you aren't necessarily one of the people who have the severe symptoms you are worrying about. Previous posters have described how they have found managing this condition perfectly possible. You really need to assume you will be able to manage it in order to reduce your stress. Stress will not help anything.

Original poster
Sienna333 · 28/12/2017 19:42

Well I have no pain now but obviously worried it will come on as I have read. It doesn't help to read how cripplingly painful it gets and side effects of meds etc and how they bloat your face out/make you put on tons of weight. This isn't going to define me. I don't want to make it a huge part of my life where it rules where I go, where I eat, what I do.

OP posts:
Fairylea · 28/12/2017 19:47

You have to remember that people tend to post online when things are going badly - not when they’re going well. I have Addison’s disease which can be life threatening if untreated but if treated well is perfectly manageable. I joined a few online forums and scared myself to death seeing all the posts from people who seem to have crisis after crisis (adrenal crisis) but then I told myself there are thousands of people with Addison’s and not everyone is suffering enough to seek out online pages to post on. You have to remember this too.

My mum has Crohn’s disease and is 70. She’s had it since she was 14 and despite a few bouts in hospital for surgery (which probably wouldn’t have happened had she been diagnosed nowadays) she manages really well, self medicating as and when needed with steroids and painkillers - similar treatment as for uc.

You have to keep positive.

magpiemischief · 28/12/2017 19:53

If you don't want this to 'define' you, the first step is not spending time worrying about it. Don't read horror stories. Do this and it is like the condition 'haunting' you through your thoughts. Distract yourself from thinking about stuff which might not even happen. Focus on their things. When there is stuff to manage take the appropriate steps but do not think beyond doing this.

NB this is how I have managed after receiving a breast cancer diagnosis. It works. Otherwise I'd just be miserable. As it is I can be hopeful and still enjoy life.

magpiemischief · 28/12/2017 19:55

That should read 'other things'. Typo.

FellOutOfBed2wice · 28/12/2017 20:00

I’ve got several family members with this OP and they get by fine. Steroids and painkillers as and when needed.

notapizzaeater · 28/12/2017 20:10

It's not the death sentence you think it is. People can and do live with it.

LEMtheoriginal · 28/12/2017 20:12

Ok so you have a diagnosis that is GOOD. It means you can take control.yrs you might have to modify your diet and have medication on and off.but you can now feel better.

The fact you are diagnosed doesn't take away the fact that you are suffering from anxiety. This will make your bowel condition worse so now is the time to seek help from it. Medication and counselling will help you.

I think you've been amazingly brave actually. I'm busy with my head in the sand just now over a medical.isdue that my anxiety won't allow me to face up to.

Now I think you're in a much better position. I'm glad you've spoken to your Dr about this Flowers

HCantThinkOfAUsername · 29/12/2017 11:25

Get the gp to print off info. Where I live fecal calproctin can only be ordered by a hospital consultant, not sure if it's the same where you are? If so could you ring consultant secretary to ask to be seen sooner because of your anxiety?

AlessandroVasectomi · 29/12/2017 13:00

My son has it. He lives a perfectly normal life, although regulated by medication. He had a few flares until they got his meds right but he hasn’t had an episode for 2 years now. He came back from a trip to India just before Christmas. Is that a normal enough life for you?

He inherited it from me. Unfortunately mine came on too suddenly for my colon to be saved, but before I had the surgery I was put in touch with a specialist nurse who briefed me about living with UC, on the assumption that surgery could be avoided. I would have had recourse to her if surgery hadn’t been necessary so there is plenty of support out there and in the end you learn how to live with the condition, just as I have learnt to live without a colon. In many ways I’m better off without it and since my surgery I’ve been to the States twice, Chile, Mexico and next month we’re off to New Zealand for a month. Is that a normal enough life for you?

DottyS · 29/12/2017 17:39

OP: knowing your history and your mental health issues - what exactly did your GP say - word for word. When did the second samples get sent off and what exactly did the results say. Please remember I am not having a go at you but your mental health issues are so severe it may be screwing your comprehension as to what the GP actually said.

Remember millions of people suffer with a variety of chronic conditions and just get on living their lives as normal. They do NOT carry on like a numpty. Did you actually discuss your mental health issues with your GP? Only once these issues have been dealt should you start worrying about any physical issues you MAY have,

Aridane · 29/12/2017 17:46

Agree with Dotty.

Oh Sienna

HCantThinkOfAUsername · 29/12/2017 20:48

Well said dotty how much longer are these threads going to be allowed for. As someone with multiple chronic issues I found the last thread verging offensive as advice was just disregarded. We knew it wouldn't be long before another one popped up.

LEMtheoriginal · 29/12/2017 21:14

Please cut the OP some slack. She is clearly struggling and needs support. I do understand that it is triggering for people but as a health anxiety sufferer myself I can empathise with the OP. If the thread upsets you just hide it

DottyS · 29/12/2017 21:29

LEMtheoriginal no-one is having a go at the OP, but feeding into her mental health issues is not and will not assist her. Only by seeking medical intervention for her mental health issues will the OP get better. Everyone is just trying to assist her in getting the correct assistance and these threads are not assisting or supporting her.

FabulouslyGlamorousFerret · 29/12/2017 21:41

That's fab news OP, you can stop worrying now and concentrate on getting it under control. Like pp's have said it can be managed and if you've only had it a few weeks you've caught it early.

Imagine if there was no explanation for that our symptoms - you'd be at your wits end .