Not sure what to do

[patsworth]

Hi,

I've posted on here a few times and had some really helpful responses. Feel s little stuck in limbo at the moment and after some advice.

Symptoms started 2002. Had flex sigmoidoscopy 2007 which GI said was indicative of UC. Started on 6 asacol a day. Another flex 2009 which just showed fissure which GI said reason for blood in stool. Vit b12 deficiency noticed 2010 and injections started. Had GI appointment after 1 and a half years (they kept cancelling me). GI said that now is prob crohns and ordered colonoscopy dec 2010.

Which is where my advice is needed really. I chased colonoscopy results which are inconclusive but I'm not sure what they saw on scope. I rang specialist nurse as I'm suffering with bloating, pain to lower right of stomach and bloody mucus stools. She said to up my dose of asacol to 12 a day and she would push an appointment with doc through.

I've just got an app through for October- a year after my last one. I am seeing specialist nurse in a few weeks which is something but I'm feeling really frustrated. It seems a long time. I think I've induced bleeding at the moment as I wad eating junk food so I'm not sure if Docs will be able to do anything. Is bleeding and mucus a flare? Any ideas of what to do about doctors or treatment? Or in your experience had the bland diet worked?

 

[Lisa]

If you do not normally have bleeding/mucous - then yes, I'd say that is indicitive of a flare. This is where I really love my Doc and health plan - if I were to call mine up with those symptoms I'd be in to see her the next day - or at least the PA.....

I'd keep pushing for an earlier appointment - you don't want to let things get to far out of hand before being seen. I'd also lay off the junk food (yeah, right I'm sure!).....and see if things improve at all....and go more toward a blander diet....

Good luck and keep up updated!

 

[Jennifer]

Mucus generally means inflammation. Bleeding obviously means there's an open wound be it some type of sore, abscess, fissure etc. For me, those are the symptoms I have during a flare along with general flu like symptoms and require intense medication (usually a steroid along with an increase in my 6MP, I no longer take Asacol, I don't see how upping the dose for those symptoms would help much if at all). A blander diet may help but wont make it go away as diet does not cause flares nor will it cure IBD.

I agree that you should try to get a sooner appointment and sometimes being seen in the emergency room (is it called A&E there?) can push your appointment sooner or you could get some tests done there, at least blood work, get your pain managed for now and get some much needed IV fluids.

 

[AndiGirl]

I would agree with the comments. Please book an appointment right away or go to the emergency room if you feel worse or weaker. Take care and please don't wait.

 

[littlemissh]

Go see your gp who will sort a sooner appointment for you. October is too far if you are flaring and your consultant will see you sooner once he hears your symptoms.

 

[patsworth]

Thanks to you all. I called nurse again today who is going to see me Monday and she agreed that Oct was too far. I'm hoping to get some answers and maybe diet/meds that will get me back on track. I can't imagine what it's like to feel 'normal'!

Thanks again though. It made me push to get app sorted.

 

[bushydougie]

I've had to push for appointments wih my GI a few times over the past year. Do you have your GI's secretaries phone number? If not you could phone the hospital and get put through to them. If you speak to them and explain your symptoms and that you need an earlier appointment they might be able to sort it. Another route is to see your GP and request for them to send a letter to your GI requesting an earlier appointment. I had to do this last month as my 2 month wait had got on to an added 5 months. I got an appointment within a month.
Don't be afraid to keep pushing for an appointment. At times I've felt a bit guilty about it as I know there are people worse off than me but you need to make sure that your health is sorted now to ensure that it doesn't get worse in the future.
Good luck and let us know how you get on

 

[littlemissh]

I don't think anyone should feel guilty about requesting a sooner appointment. It's not being pushy it's requesting a more appropriate appointment for your needs. Consultants nearly always add a bit at the end of letters saying they would be happy to see sooner if there are any problems before the planned follow up date.