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Posted 9/17/2014 1:58 PM (GMT 0)
Hello all!

I'm a 21yo female from the UK and I just got back from my first ever flex-sig (what a milestone, right?). I had huge problems with the moviprep and was vomiting it up with dry heaves lasting until right before the procedure so bowel prep wasn't great but they fortunately were able to go ahead.

I've been having symptoms of diarrhoea with blood and mucus, bloating and cramps for 8 weeks now (though looking back I can recognise similar symptoms over the past year). I saw my GP for this who put in a referral for a gastroenterology opinion. In the meantime, I had a rectal bleed and was admitted to hospital. This sped things up a bit and I got an urgent flex-sig appointment.

They went through my results with me straight after and said it was evident of moderate proctitis and I will need to wait for an appointment with the consultant. I'm a bit in shock! I have a diagnosis of lupus too, which took 8 years to get so being given a diagnosis within four weeks is very speedy for what I'm used to. IBD was suspected even before today so I've been reading around it and wow, it seems a tricky thing to treat.

If anybody could give me a rundown of what to expect in the next few weeks I'd be very grateful. Will I need a full colonoscopy? Is there a go-to medication that tends to be prescribed in the first instance? Are there any lifestyle changes I can make while I'm waiting for my appointment to come through? I've so far been unable to find a link between my symptoms and particular food types.

Huge thanks in advance (and sorry for any typos! I'm still feeling a bit woozy from the midazolam!)

Liss x
Posted 9/17/2014 2:17 PM (GMT 0)
Concertinal, you have UC proctitis, so you will need a maintenance medication for life. For proctitis, that usually means a once a day meslamine-based suppository (e.g., canasa) which comes in either 1gm or 4gm sizes. It is important that you take it everyday, regardless of whether you feel or good or bad.

Some with uc report that diet changes improve their symptoms, others notice no difference at all. Keep a food diary, record what you ate and how your uc symptoms were the next day. See if you can find any correlations (e.g., everytime I eat spicy chili I have a bad morning) and eliminate accordingly. There is plenty to try, just know every case is different, and what works for one doesn't necessarily work for another.

Generally when having a uc flare (as you are having now), we recommend avoiding excessively high fiber diets, avoid spicy foods, avoid alcohol, and avoid caffeine.
Posted 9/17/2014 4:01 PM (GMT 0)
Please check out the resources thread at the top of the page. Also, different countries treat different ways with different meds.
Posted 9/17/2014 4:27 PM (GMT 0)
Liss, sorry you had to join us here on this forum.

While you are waiting for your appointment I would spend that time reading information on your condition, this is an illness that you yourself have to be informed about, I cannot stress that enough, so read as much as you can, it will make you feel more in control. With regards to diet its a good idea to keep a food diary for a short while, as its possible some foods may aggravate your gut, one of the most basic food eliminations is to cut out is dairy, many people do find they have a problem with that initially, you may be fine, but its worth looking at..
Posted 9/17/2014 11:09 PM (GMT 0)
Hiya Liss
I'm in the same boat , I was diagnosed on Monday with .... Well all they said was uc. I was given 6weeks worth of prednisolone steroids , some crystal things that are yakky!! And something I can only consider to be a foam firework that goes up my bottom like a huge explosion. £24 later. I was then sent on my way and they said they will see me in 8 weeks!
Anyhow I took the week off work to try and get my head around this. I've still not really taken it all in! It just all happened do fast, hence why I joined the forum well gotta start somewhere and I'm sure I'll be here again soon.
I do have a quick question? Anyone on here know if 6 weeks of prednisolone starting wk1 30mg wk2 25 wk 3 20..... Etc is gonna make me blow up like a balloon I've never had to do this before and well very anxious about.... Well everything really.
Gonna stop now as it's very late but I am sure I'll be back well if can remember my username.
Take care ok Liss. Remember ya not alone and by what I've seen on this forum ( 1st one I've ever joined) so far I'm sure these guys will help us out
Good night
Mark
Posted 9/18/2014 12:09 AM (GMT 0)
why, you got a problem with balloons 76? how bout clowns ?

;-)

ya, you might - everyone reacts in their own, wonderful way - a lot depends on how long you're on the pred -

a lot depends on you and how your body reacts -

so the short story is ........ it's all individual :-)

kinda like waiting for Christmas day to see what's under the tree - with uc, it's more what's waiting in your pants shocked

good luck you newbee's - you're in for an adventure -
Posted 9/18/2014 7:39 PM (GMT 0)
Thank you all for your prompt replies! I'm not feeling too bad about it at the moment. It was expected, which helps, and unfortunately I'm no stranger to life with a chronic illness! I think I'm still viewing it as an added symptom of lupus as opposed to something new and separate.

@iPoop - I think I'll cope with the medication fairly well. Lupus means I'm used to taking meds so hopefully it won't be too difficult to fit a few more in. The real problems will come if there's any trouble with the various meds interacting. I'd assume not since they're both autoimmune-ish but that's a bridge I'll have to cross as I get to it.

I've been keeping an informal food diary for a couple of weeks and so far I'm having no luck. I'll be a lot more proactive with it and see if anything jumps out. So far the only trigger I've noticed is alcohol. Ever since I was old enough to drink (18 in the UK!), even one or two drinks have resulted in 6-8 hours of sitting in the bathroom. I've sworn myself off of it now and I'm not especially missing it.

@garylouisville - I'm slowly but surely working my way through the resources thread. It's a bit of an overwhelming amount of info at the moment so I'm dipping in and out of what I think is relevant at this stage but thank you to everybody who contributed to that thread!

@Poppie - I am from a medical background so I already have a fairly good foundation knowledge of IBD. Pharmacology is where my knowledge falters but the huge range of treatments for UC means I don't really know where to start in trying to understand it.

Eliminating dairy is probably what I've been dreading hearing the most. I am a dairy lover! I've not noticed any correlation with it so far but keeping a more detailed diary and discussing this with my doc might shed some light. It's definitely worth trialling a dairy-free diet though so it's something I'll look into.

@Mark76 - Sorry to hear we're both going through this together! My flex-sig was done by a nurse practitioner so although she was able to carry out the procedure and report on her findings, I've got to wait for a separate appointment with a doctor to get the ball rolling with regards to treatment. It's probably a bit late this time but are you aware of pre payment prescriptions? £29.10 gets you unlimited prescriptions for 3 months so if you need 4 or more prescriptions in that time frame it's saving you money. Definitely worth bearing in mind for next time you have to visit the chemist!

Fingers crossed for you that your combo works for you. Regarding the prednisolone - I have taken it before for lupus and I didn't notice any significant puffiness but as said above everybody is totally different! Good luck with everything to you too!

@soystud - I'm trying to look at it as an adventure! I wouldn't say I'm a particularly optimistic person but I'm not feeling particularly down about it at this point.
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