Looking for some advice

[Squadinho]

Hi guys.

Haven't posted on here in a while. I've been on Remicade for 18 months and its been the best thing ever, but i'm due my next infusion on Friday and I've been flaring for the past 3-4 weeks and its getting too much for me now.

I've been "properly" flaring for the last two weeks. My nurses offered me the chance of a week early infusion, but I was unable to get the time off work, so things have been getting worse and worse. I'm going to the bathroom at night every 30-45 minutes although during the day its not so bad (i tend to block myself up on co-codamols but they seem to be losing effect).

I know its only four days till my infusion, but I'm just looking for some advice really, as I'm really struggling to cope with it. I would say this is worse than my initial flares and its a Bank Holiday weekend here in the UK so my GP and nurses / consultant won't be working til Wednesday.

I'm reluctant to visit the out of hours GP because last time I did I was completely humiliated by her, and I don't fancy that again, not when I'm feeling as low as I am.

 

[shazz]

Hi squadinho

Sorry I can't offer any advice but just wanted to say hang in there.
If you could face going to the out of hours docs, I know what you mean about them, then do so and really get your point across.
How about the nearest a&e to you? You could go there and demand to see the on call gi doc.
I really wish you well in what you do hun.
Let us know how you get on
Xxxxxxxxxxxxx

 

[David]

I'm sorry you're struggling right now

Maybe try switching to total enteral nutrition until you get your next infusion?

 

[Squadinho]

Hi guys, thanks for replying.

I had another bad day yesterday, i took about 400mg of Tramadol which put me out for the night so had a better nights sleep.

I'm thinking of calling the out of hours GP and just going for it.

With regards tp Enteral Nutrition - are you able to buy pre-made formulas in local chemists and pharmacies?

 

[David]

I'm not 100% sure about the UK but here in the USA you can and I'd be surprised if you cannot.

 

[shazz]

Complain and buildup are the only ones that come to mind.
Not sure about the others. I have got all mine on prescription as I buy the yearly pre payment card.

Call the out of hours gp and get them to refer you to a gastro doc. Then get them to give you the treatment you need.

Easier said than done, I know from experience, but keep at em.

Keep us updated.

Xxxxxxxxxxxxx

 

[Squadinho]

Right I went there on Tuesday evening, very pleasant experience actually. Was in the consulting room for around 30 seconds and left with a prescription of Pred to tide me over until my infusion (which is tomorrow).

Good job I'm writing this post now, actually as I would have forgotten to take my pred dose this morning, lol!

Also spoke to my IBD nurses at the hospital yesterday and after a discussion with them I think we're gonna try Methetrexate in combination with my infusion. Will know more tomorrow when i see them, have my infusion and see my consultant. Busy busy!

Will also ask them about the liquid diet things, hesitant to try them with out medical advice.

 

[shazz]

Really glad it went well for you this time.

Its always a good idea to get as much info on any new meds or diets. Just in case.

Good luck with the Pred and the infusion tomorrow.

Hope the consultant can sort you out tomorrow.

Let us know how you get on.

Fingers crossed for you. Xxxxxxxxxxxxx