Bit at a loss as to what next

[Danceruk]

Thought I better make a fresh thread from my appointment one

Went to gastro, he given me Movicol to take, I had to stop taking this friday as the D was so extreme. He checked me over, stuck a pipe up the backside..etc etc.. Said things would calm down with the Movicol and pain would ease once the backed up stools cleared. Was going 10-15 times when I went to see gastro.

Last night was up 3 hours with D , I had 2 tablespoons of mushy rice. Paid for it in full!!

Having trouble drinking the Provide Xtra - have asked for the REAL Ensure Juice plus. Hoping it tastes better and can force that down - does it taste any better?? The Provide Xtra is bitter and syrupy

Just dont know what next, Gastro says inflammation fine, that on the mend, should feel better after a few days...which I am not still. Dont even want to try to eat anymore, its so distressing, already having to dash to loo on just water!

Having plenty of water, tea etc.. Just so tired all the time, people think I have a choice about eating ...which I dont!! So frustrating.. my family are well and truly sick of hearing it now...

Back to Gastro January, my GP isnt all that helpful so not going to waste more time with him right now.

When is too much D too much..??? more than 20 times?? I dont know.. I guess my margins or normal are pretty wide now!!

Hope its okay to post..sorry if its a bit of a vent guys

TTFN xxx

 

[Crohn's 35]

Hi Dancer, sorry you are experiencing so much D. Apple sauce really helps and it is a safe food providing it is no added sugar. Ask your doctor about Questran (Cholestyramine) alot of people use it and works for them. You shouldn't be having that much D in a day. You are tired because you have no nutrition in your system. When was the last time you had blood work? :hang:

 

[Danceruk]

The gastro says I am to take Movicol long term, so I guess I need to keep taking it everyday. Just so sore, been particularly bad without taking it over the weekend...so adding in laxative.. eeek

Had blood work done 3 weeks ago, all fine he said

Thanks so much for your sweet reply, I am.. just try and keep quiet around family.. they think I did something to bring this flare on...no point getting worked up trying to argue my point!!

Thanks again x

 

[Jennifer]

Hmmm, is there any chance that you could get a second opinion? I find it hard to believe that you'll be fine in a few days based off of what you've been saying. Many of us have to try 2-4 or more times to find a good GI doc. My last one blew chunks. Keep the appointment in Jan. but I'd continue looking for someone else if you can. As for when is too much D too much, I can't say. I deal with it daily and have been for years but I go 1-5 times a day not 10+. Have you tried any over the counter stool hardeners? They aren't meant for long term use but it may give you some relief every now and then until you can find a better GI.

Edit: Stool hardener may not work if you're taking a laxative though. Forgot you mentioned that. :voodoo:

 

[Danceruk]

I got that appointment on cancellation, would of been January to see him otherwise, so no chance of getting a second opinion

Hmm.. he says I need to take the Movicol and has written to my GP saying inflammation clear, to take the Movicol daily. Which is a struggle right now.. Maybe I did need it, but dont need it anylonger... not too sure

Right now just passing liquid, had movicol last Friday..sorry if tmi .. When I am in remission I go 3-5 times, since flare 10-15 has been the norm.. now I can easily go upto 20.. glued to the toilet till early hours last night, must of gone 12 odd times in 3 hours.. I just stayed in there in the end..took my book and heatpad!

Might take a trip to GP.. but I think he has very much written to him saying I am healthy and all I need is the laxatives until I see him again...

 

[gypsigirl28]

Hi Danceruk,
I am a little confused, if you are having alot of D why would you be on laxatives?? Wouldn't that make it worse? Can you get a second opinion from another GI doctor. I think I would be checking into that.
I am sorry that your family dont want to hear about you having a flare. You always have all of us to vent to and get some support. I hope you start feeling better soon

 

[Rebecca85]

Hi dancer, sorry to hear you are still struggling. Is the GI certain that you are still backed up? Is there no other way of clearing you out (like irrigation, or some kind of massage to loosen the blockage)? If all else fails, can you go to a walk in centre (or a and e) and get some iv fluids, explsin what your doc has said, and get a second opinion that way?

 

[Claire617]

Heya danceruk, I completely agree with rebecca get yourself to a+e, get some iv fluids etc it seems like you've lasted so long feeling like this. I ask the same question why are you on movicol if you're having bad d?? When I was flaring the max I lasted was something like 2 wks and then my gi had me admitted so I find it pretty crazy that the condition you're in the nearest app is January and that's really only an app and not treatment. I know it's hard when your ill but I think it's time for you to kick some butt, take no **** and get a better response from these guys. Take care m'dear xx

 

[DustyKat]

I still have concerns about this treatment being ongoing Dancer. I don't wish to question your doctors orders but I just can't make any rhyme or reason out of it. Personally I think the time has come to have an X-Ray to determine if any faecal impaction remains, I will add here that in view of the fact that you have always had diarrhoea I think this should have been done in the first place. There is a vast difference between diarrheoa and the type of loose faecal matter that occurs due to constipation with overflow.

Dusty.

 

[Danceruk]

Thanks for all your responses guys.. finally went to bed at 3am..again!

He did xray me and told me I was backed up in upper and needed the Movicol. The lower was clear. He wrote to the doctor saying to prescribe it to me long term - stating no longer flaring, all looked fine

This has been erm.. 6-7 weeks now.. which feels insane after 3 years flare free, but I know in the grand scheme a couple months is nothing really.

The treatment he gave me was the Movicol, advised me to stop everything else.

Thanks again guys x

 

[Astra]

Hiya Dancer

I'm not familiar with this, so I googled it, I was shocked to learn that you mustn't take it for more than 2 weeks, or if you've got Crohns or UC, or an intestinal blockage, it is for a short term solution for impaction, so I can't believe your gastro has said long term?
It's like he either doesn't give a ****, or doesn't know what he's talking about.

here's the link

http://www.netdoctor.co.uk/medicines/100001760.html

hope you feel better soon
xxx

 

[Danceruk]

Thank you Joan for doing that research for me

I will stop it for the time being, make an appointment back to the GP for a week or so

Not too bad today, only had sparkling water so far, fingers crossed

Thanks again guys

 

[Danceruk]

A quickie update... I just got in... my PPC card landed & ... 30 Bottles of Ensure were waiting for me at the chemist at last!!!

Praying they taste okayish... anything is better than the Provide Xtra

D a bit better today ..only had water today, so hungry, gonna chill an Ensure and sip that slowly tonight

Thanks so much for all the support guys

xx

 

[Astra]

Good luck with the Ensure Dancer!
xxxx

 

[dustydshook]

It doesn't sound right to me. That you would have a fecal impaction in the small bowel?? Your food doesn't actually become fecal matter until it gets to your large bowel. right??? IDK i am not sure. If it is in your small bowel maybe it is actually a blockage caused by scar tissue. Again I am not sure but it sounds as if you need a new GI quickly not in January.

 

[Danceruk]

The Ensure Juce is delish...aaah..lovely

Thanks dusty.. I dont know.. I just looked at the xray and accepted what he said as being right... I think he pretty much didnt believe I had any IBD as he didnt have any notes.. I looked healthy etc as he commented...

He has now written to GP saying no further Steroids needed, no inflammation, just to daily use Movicol. Just glad he is happily giving me the Ensure atm

Getting a new GI easier said than done..lol lucky to see this one this year really. Hopefully things will calm down soon, at least now I dont have to struggle on just water, can have 1 Ensure a day or even 1.5 a day

Thanks so much guys