I have ulcerative colitis. Ask me anything

[PinkGlitter123]

Go!

What age were you diagnosed?
Do you have any form of colostomy or iliostomy?

Just over a year ago.
No form of colostomy/illostomy.

The diagnosis process, was it arduous?
Did you have an idea that you had UC prior to the diagnosis?

No major symptoms leading up to it although did have a few bouts of loose stools and was noticing a lot of mucus when I went to the toilet. I just put it down to IBS as I wasn't in pain.

Had six months on and off with severe symptoms and ended up going private in the end as was taking too long on the NHS even with sky high test results.

I had a sigmoidoscopy a few months ago. The industrial strength laxative I took in the morning of the procedure failed so the Dr said there was a lot of mucus but saw what they suspected were ulcers and took several biopsies.

I'm still waiting for the results but was wondering, if UC is confirmed, what the treatment pathway is and how the condition is monitored?

Can I ask what your symptoms were before you decided to go private?

Thanks. I hope the condition is under control for you now.

Hi Rusty,

Sorry to hear this. I hope you get some answers very soon.
My symptoms were horrific. Severe diarrhoea (Up to 40 times a day and throughout the night), terrible urgency, bouts of lots of blood in my stool sometimes even just passing blood, stomach cramps and vomiting. My calprotectin level came back as over 300025 when it's meant to be under 50. Even despite all those symptoms I was not been seen quick enough by the nhs so I booked a private consultation and a week on had a colonoscopy. There I was diagnosed with pancolitis (Whole colon inflammation). I was put on a course of steroids and a drug called octasa. Was told it was 50/50 whether the octasa would work but over a year on, thankfully it has. If it does fail me I will be put on an immunosuppressant.

I have checks twice a year but always have access to a helpline if needed and can request blood test forms and sample bottles to be sent out at anytime if I am worried I am flaring again. Generally apart from the odd blip I am ok. I do have days where I go for a BM more often and get quite down about having the disease but I try and live day by day.

This point you are are now is really tough. Once you get a proper diagnosis and on the right meds it will feel easier.

Take care x

Oh my goodness, your symptoms were horrendous. Can't believe the NHS didn't see you quicker; it must have been such a worrying time.

I think I'm struggling with the potential diagnosis. Over the space of a couple of years I developed a few illnesses so the prospect of another is hitting me quite hard and having to go through more prodding and poking.

Luckily, my friends have been great at understanding if I have to cancel plans last minute but that's another worry, if they start to get sick of me.

Thank you for sharing your experiences. It's good to have an idea of what happens next as finding information about that is a bit sketchy.

Wishing you well for the future x

Feel free to send me a message if you need some support or post on here. Please don't google too much as there is a lot of misinformation and scaremongering.
Take heart also that there are people like me who presented with terrible symptoms and sky high levels but are doing fine now.
The worst part for me was where you are now, in that state of limbo. Once things get moving you will feel easier about it all. It's not easy having this disease but it becomes more bearable and you will feel stronger and more confident in handling it as time goes on x

What were your symptoms?

Sorry just realised you've answered that already

Drastic weight loss and rectal pain too. I didn't have all these symptoms at once but towards the end I did. It was a terrible time.

That's so kind of you Pink, thank you x

Yes, being in limbo feels awful. I feel a million miles away from ever being better. Doesn't help that there's a backlog with biopsy results in my area and although I know these things happen, my mind is racing convincing myself of all sorts of terrible outcomes (so, yes, probably best to avoid Google!).

It's so good to hear you are coping well and feel better. It does give me hope my symptoms will soon be manageable. Thank you for starting this AMA!

Are you on a low residue diet?

My DH had very similar symptoms to you, it was so awful watching him suffer. A course of Steroids sorted him out too. No questions but I hope you remain well and symptom free.

Rusty- I really hope you get some answers soon so they can get you on the right treatments. Keep the faith, it will all work out ok x

Ch3rrycola- I do have to be careful what I eat but generally I eat what I want. That said, I do keep my fruit and veg limit to about 2 a day, don't drink alcohol anymore and have to limit red meat as I have noticed these can cause some issues.

Monique- Sorry to hear your DH has experienced the same but glad he is doing well now. I was terrified about going on steroids but they did a great job of helping me to feel better.

I have been having bouts of diarrhoea with blood and mucus and doctor said is was possibly UC. I also suffer from heartburn and stomach pain. My dad died two years ago of bowel cancer so I'm panicking that I have that. I have been referred for a sigmoidoscopy but the wait is 8-10 weeks (5-7 weeks left). I'm so scared and at this point having a diagnosis of UC would be such a relief.

Hi Lucy,
This stage is the hardest. I too have bowel cancer in my family so was worried it was that.
Just to give you some reassurance, I also had heartburn with UC.
Let us know how you get on. The waiting is horrible but you will come out the other side x

Thank you, this is the worst flare up
I’ve had, I’ve had bloody Diarrhea for over 10 days, with no sign of it getting better. I’ve been told that the colonoscopy has 8-10 waiting list so I have another 4-6 weeks to wait.

I'm so sorry.
I hope you get seen quickly. Most likely the first line of treatment will be a course of steroids. With me it worked almost overnight so I hope it will be the same with you. Once you are on treatment things get more bearable.
You have my full sympathy as I know how horrible that time is when you don't know what's going on and are dealing with all the horrible symptoms. It won't be like this forever x