Could this be Ulcerative Colitis?

[Chocol8]

Sorry this is gross, but i am worried and looked online (prob not the best of ideas) and found that most of my symptoms seem to fit UC: different coloured stools which frequently changes but is mostly very loose.
Blood in stools (a lot), if i pass wind, i can pass pure blood but usually mess myself (very unpleasant), stomach churns constantly.
Being sent (eventually) for a colonoscopy to have a look see. Does anyone know what else this could be please? x

Hi 14, i'm not sure if that is correct or not - i got my appt through to attend the gastro dept (at both hospitals i attended via choose and book), but they may not always work the same way.

I have been in more pain today than any day in the last 6 months but it has been severe period pain instead of UC pain. I have started a week early and it is the most horrendous one i've had in a long time. Weirdly this pain seems to have cancelled out the UC pain - and this happens every month for a few days. Does this happen to anyone else?
I have literally been unable to stand and even talk at some points today.

I have received a new appt for next Tuesday - it has been bought forward by a fortnight and am waiting for the prescription for the Pentasa foam enema (woooh!).

Hope you ladies are all doing better.

Hello chocol8 just popping in to say hang on in there. My UC was diagnosed 12 yrs ago and the first 2 years were the worst. Now I am on oral pentasa (the enemas didnt work for me) and a gluten free diet and I am fine. Plain yoghurt with every meal helps soothe the guts a bit, and avoid chillies.

so sorry you are hurting
good job they have brought your appointment forward
x

Hey Funny - thanks for your message. I am taking the Pentasa granules, but haven't noticed much of a change yet. Gluten free eh? Mmmm - and plain yoghurt. Right, i'm off to Google gluten free and see what i can eat! Shame about the chillies, i love them - but know they don't love me!

Hi ladies, 14 my appointments are always in the gastronomic dept. But it could be different in the hospital you've been referred to?

Chocol things sound bad for you, I hope you are ok. I have been on the salofalk foam and a reducing dose of prednisolone steroids for 4 weeks now, I have found that I am much improved and spoke to my nurse yesterday, she is so supportive and lovely, I am trying to reduce the steroids a little quicker, I am on20mg now for another week, then a week on 15, week on 10, week on 5mg, all being well. After this week I will go back to using the pentasa suppositories, so hope All stays settled.

I avoid bread too, I noticed funny is gluten free. Bread makes me bloated etc. For constipation I use fybogel, it is natural, though I though senna was natural too. What is melanosis? Have you found the foam working any better. With this flare up the pain was so bad that I could not bend down or feed my dd in certain positions as that must have been affecting the inflmaned area and the pain was like terrible period pain, so maybe your pain is also linked to the uc? I really hope you hpget sorted soon, when is the new app?

Old bag, how are you and how was that party? Did you start the steroids?

Sorry Chocol have just seen that you haven't even been using senna products- so what does this mean for you?

Hi Ava, the only thing i can think of is that maybe there was senna in the products i was prescribed for long term constipation. Either that or some light treatment i had at the hospital two years ago...?

It's nothing to worry about though - it just has a big name, lol!

I'm telling you guys; but don't laugh

We are off to London next week by train & there is engineering works, which means it is a coach for part of the way

I am terrified & I don't think I can go

Oh no Katy! It's not funny - i'd be petrified too! Maybe the coach has a loo...?

But I could hardly use it.......the coach is too confined

Yes, i do see what you mean Katy. I can't go anywhere very far - even local journeys are very problematic - even the school run. I have been to the loo about 40 or more times today.

I have my consultants appt tomorrow - i will tell them that i cannot continue like this anymore. It's really getting me down now and i really can't bear another day like this.

I really hope you lovely people are doing better than me.

I will be thinking of you tomorrow chocol8 and hope you get a better plan of action. Good luck.

Good luck & we are thinking about you

Aww, thanks lovely ladies. I do feel a bit happier after seeing the consultant this morning (only managed by not having any food or drink until after my appt, by which time i was Hank Marvin).

He (the consultant, not Hank) has prescribed me Azathioprine 50mg tablets along with doubling the Pentasa granules daily. Along with the Pentasa foam enemas, we are hoping it will do the trick.
However, if i do not feel any better by Monday i am to call the UC nurse and arrange to go into hospital for a week and IV steroids. I would obviously rather avoid this completely so am really really hoping this new medication works. I have another appt in two weeks time (if i am not admitted) to see how i'm doing and for blood tests as the Azathioprine can apparently alter your blood.

Have had a slightly better day today urgency-wise but still the giant pile of Azkaban rages on.

Yes!! That sounds like a plan. Glad you have some support and although you won't want to go to hospital, at least it's an option if the medsdont work. Glad you feel a little happier.

Chocol you poor lady, that sounds horrendous. I hope this new drug works for you! Keep us posted and take care, you must be wiped out.

I am feeling so much better, the foam mesalasine enemas are finished now and I am back to the pentasa suppositories and tomorrow I lessen the steroid prednisolone does down to 15mg from 20, I have to reduce by 5mg a week as long as all is well. Oh and I must also bleach my tache! A lovely side effect of the steroids

Katy,i completely could not travel by coach if I was having a flare up...hope you ok. What will you do?

Well done OldBag...Happy Birthday Spiderlight!!!

Is anyone else on Azathioprine tablets? I'm a bit scared of taking them!

Thinking back on the conversation with the consultant, he said that the Aza will take a long time to have any benefit, but he told me that if i'm feeling no better by Monday to be admitted....? That doesn't seem t make any sense does it?

Hi Chocol, I take Azathioprine for my Crohns disease. Have been taking them for years now with no problem. With me, they started me on a low dosage, then built it up gradually to what my body could handle - currently 125 mg daily.

Only downside is having to have blood tests every 3 months because they can affect your white blood cell count, but would rather that than have constant Crohns flare-ups. Oh, and they make your wee go brilliant yellow!!!!!

HTH

Thanks Prforone! Liking the brilliant yellow wee! Wow, i'm only on 50mg but would rather have started off on 25mg.

It says in the PIL that blood tests should be done weekly, but i have my first one in a fortnight.

Can i ask, did you lose any hair or have any of the other side effects they mention?

It's quite possible you'll need more regular blood tests to begin with as it's a new drug being introduced to your system. Haven't noticed a great loss of hair, to be honest - my hair's quite thick and I've found I've lost a bit each time I wash it since starting on my first lot of drug treatment when first diagnosed (Pentasa and prednisolone - though not on either of them any more). But certainly not enough to cause concern or be noticeable.

One thing I would ask - are you planning on TTC in the future? (Sorry, have only picked up on the last part of this thread so don't know your circumstances ). Nothing to worry about - it's just when I got married in 2001, my consultant took me off the Azathioprine because I said we were TTC. In 2003 (and no baby by then) I had a massive flare-up and was hospitalised for two weeks. My consultant thought it best to put me back on Azathioprine and said we could still go ahead TTC, despite taking me off it in the first place for that very reason! I fell pregnant in 2004 and took the Aza's all through my pregnancy with no complications - although having the drug in my bloodstream sadly meant I wasn't allowed to BF.

Just wondering how you were doing now?

Glad you've seen the consutant, Chocol8. Don't be scared of the IV steroids - they were miraculous with me and sorted everything out within a few days (and am now on month 5 of total remission with just a maintenance dose of Pentasa granules). I'd rather them then Aza, to be honest, but I know a few people who are on Aza and doing fine with it. It takes 6-8 weeks to kick in though, according to my IBD nurse, so I'm not sure why they're on about Monday!! If you do end up having the IV steroids, ask about being a 'satellite inpatient' - I was allowed to go home between doses towards the end of my stay in hospital, which kept me sane! Had to stay in at nights though.

I think we are driving down now

Thinking of you Chocol8

Hi and welcome Julialyne, thanks for asking. Are you a sufferer too?

Thanks Prforone, that's really interesting. No, i have a 14yr old ds and way too old to do it all again sadly.

Unlike you, i have fine hair and not a great deal of it so i don't want to lose anymore.
I have taken the first Aza this evening although i was nearly put off taking anything as at 4pm (thank goodness i was home) i had the worst diahhoria ever. I half filled the toilet bowl and was shaking cos i was so cold. I had a plastic bag on my lap cos i felt sick, but wasn't. I crawled into bed and stayed there for 2.5hrs - trying to get warm when the sun was shining outside! Still a bit delicate but have taken the second Pentasa and have Asacol foam enemas for later (couldn't get on with the liquid enemas or suppositories, it was like shoving a bullet up my bum!).

I am hoping the steroids will sort me out Spider - so good to hear you've been in remission for 5 months now!
I did ask my IBD nurse about the consultant saying that if i wasn't better by Monday - and she said 'maybe he just wanted to know how you were'.....?

Katy, yes, that's an altogether better idea - that will take the stress out of it won't it? Hopefully you can relax and enjoy the journey now.

PS, found out yesterday that i also have some UC on the right side too although it is milder. Been told up til now that it was only left sided.