Hey all I'm new here so apologies if I get anything wrong, also I'm not a mum and have no intentions of being, I hope that doesn't mean I am not allowed here!
I am merely wondering what the timescale was on any treatment you, or anyone you know, had for Ulcerative Colitis...
My timeline is so far is this:
Mid April 2018 - went home sick from work on a Monday with nausea, dizziness and headache. I just assumed it might have been something I'd eaten/drunk the night before. Got home around 11am, fell asleep, and only actually threw up at 6pm that night.
A few days later I started with diarrhea, I had every intention of going back to work on the Friday (my working days are Friday, Saturday, Sunday, Monday) but I booked a doctors appointment for the following week just in case.
My boss called and asked if I was coming back, and we agreed it was best I get better first, and I should use the GP appointment.
GP tried lots of basic stuff for vomiting and diarrhea (peppermint oil, lansoprazole and other stuff) and it wouldn't shift, he tried me on predisnolone for a week (40mg a day for 7 days) and asked me to go without it for 7 days and report back to him with the difference. I felt better temporarily on it, and awful when I came off it. So he gave me a "reducing dose" of it for two weeks. But decided to refer me to hospital. He wasn't sure if it was Inflammatory Bowel Disease (IBD, Crohns or Colitis) or Irritable Bowel Syndrome. But he put me on 400mg of Pentasa, a low dose of Mesalazine, to see if it helped, it didn't.
Mid June 2018 - had my colonoscopy and was diagnosed with Pancolitis (Ulcerative Colitis that affects the entire colon, as opposed to just a small section) and was prescribed 4.2g (4200mg) of Mesalazine for it, ended up on Asacol as the pharmacist didn't have Pentasa.
Late August 2017 - I was so ill I didn't get out of bed for a few days, and as lazy as this sounds my meds were kept in the living room, and I didn't take any during that time... and my incontinence stopped (which I only noticed as I'd managed to stay in the same pyjamas for those few days, instead of changing several times a day). I had assumed incontinence was part of the illness, like the blood loss, cramps and other symptoms... not a side effect of Mesalazine. I told my GP all this and that I had stopped taking it, and he agreed with me that it was the right decision, despite it being an unheard of side effect.
Late October 2018 - finally saw a specialist. As it turns out the guy who did my colonoscopy, and the appointments before and after it, was just a surgeon.
He asked about my medication history so obviously I explained my major issue I seem to have with Mesalazine. He said some people have that reaction to certain brands so to try Pentasa instead, I told him I'd been on that too and it had the same effect, but it seemed to go in one ear and out of the other. He prescribed 4g (4000mg) of Pentasa, and a reducing rate of Prednisolone for 8 weeks (40mg a week for a week, 35mg for the second week, 30mg for the 3rd week etc...) and told me to go book an appontment to come back in 8 weeks.
He also asked if I felt the need to be in hospital and I said no. Purely because I currently live alone and don't want to face being on a ward and sharing a toilet with others, given that I'm having 20 bowel movements a day, that and I'd miss my WiFi, though I didn't tell him any of that. I merely said I was still coping, getting shopping from a nearby shop etc, and I thought I'd be a waste of a hospital bed. (I'm not dead yet so I'm fine, right? 😂) and he said "oh so you're still able to work then?" And I was like err no I've been signed off sick for 6 months now...
The receptionist at the appointment said there was a waiting list and I couldn't book an appointment, so leave the letter with them and they'd contact me to book me in...
Went to see my GP a few days later and told him the specialist had put me back on the godawful stuff... and he said "so let's try and bung you up then" which made me laugh, I don't think he meant to be funny but it tickled me anyway ! So he gave me Loperamide to try for 7-10 days, and if that didn't work Codeine Phosphate at 120mg a day to try. I did 10 days on Loperamide and it gave me unbelievable stomach cramps, didn't slow down my diarrhea at all, and bloated me up so I looked about 4 months pregnant. So I stopped taking it. I tried the Codeine instead which did wonders for the stomach cramps, helped ease the frequency of bowel movements, but did not stop the incontinence. I lasted 6 weeks on Pentasa before I ran out of pyjamas (and I own a lot of pyjamas, but I couldn't wash and dry them as quick as I was messing them up) and I got fed up and stopped taking it. I told my GP this and again, he agreed with me 100% and he was actually surprised I'd kept taking it as long as I did! (Me too I suppose, but I'm a pushover and I try do as I'm told)
Early December - got my "come back in 8 weeks" letter for 4th of February (this upcoming Monday, at last!)
But it says it's with the IBD Specialist Nurses Team and it's called a "General Medicine Appointment" and I'm not sure I'm going to be prescribed anything new...
My GP thinks I will as he says they can't leave me bleeding (been off nearly 10 months now) as I'm anaemic, vitamin D deficient... etc... among other issues like general malnutrition and weight loss.
But I've read about treatment and it seems to approximately be...
Step 1: 5ASAs like Mesalazine
Step 2: immunosuppressants
Step 3: biologics
Step 4: if all else fails, surgery.
And I'm merely wondering how I've been ill 10 months and only seen "Step 1" ... and if I am going to require more intensive treatment, how long am I going to have to wait?
Apparently immunosuppressants take months to work, so what if I try that and fail, then have to try something else then fail... I'm terrified I'm going to be off work for months or years yet to come... and funnily enough I genuinely love my job! That and I'm currently skint and relying on the awful Universal Credit just to pay my rent and barely get by...
So I was wondering if you'd share your stories of how long it was before different medications and/or surgery was given to you?
Sorry for the long post, thank you for reading, and thanks in advance for any replies, all other advice welcome ☺ x