Ulcerative colitus sufferer since 1984

[EDZEL]

Hello

I'm female, 53 yrs old and live in the UK, and I've been a sufferer of UC since 1984 and have only just discovered this forum - have a feeling I may wish I'd found it years ago but hey-ho...better late than never!

Sitting here waiting for first sachet of Piccolax to take effect....took it just before 4pm because I have an endoscopy booked for 1pm tomorrow, and am a little concerned because nothing has happened yet! (its now 9.15pm!) Have been searching around online to find out how other people have fared, which led me to this forum so I thought I'd leap right in... I read some (rather scary) reports on a US blog about other people's experiences with piccolax so I am half expecting to have to to rush to the loo at any minute...trying to keep up with the 250mls of fluid every hour and have had very few wees (unusual for me!) so something horrific will surely happen very soon (I've warned my hubby and son to steer clear of the upstairs loo!) - all that water must be going somewhere, right???!

This is only my third or fourth procedure since the initial diagnosis - the last was in 97 I think. My condition has been maintained with Sulphasalzine (2 x 3 times daily for many years then more recently it was upped to 3 x 3 daily - which I've recently been told by the consultant is a very high 'maintainence' dose but since no one ever said that before or suggested I have it reviewed, I had no idea!!! I feel slightly abandoned by my GP but suppose I should have been more pro-active too... I do get chased for the six monthly blood tests (which of course I do get done) and all has been well - but when i had problems earlier in the year and my GP referred me to the consultant at my local hospital, they were very surprised that their department had apparently 'forgotten' about me. ANd the first appointment they gave me got cancelled... and the next... and the next....then they kept sending me ones I couldn't make and had to refuse! now finally its going ahead tomorrow... and the piccolax doesn't seem to be working so I'm not a happy bunny at the moment! Has it ever happened to anyone here that the first sachet has never worked and what were you given the next time???

I also take folic acid daily, is this something other UC sufferers take or is it just me? It was suggested after I lost our first child in 91 due to spina bifida that it may have been due to poor absorption of nutrients due to the UC but I've never had this confirmed. Took a course of folic acid supplements then and have been on them ever since, and my son is now about to go to University so I got something right I suppose!

I've kind of got used to the sometimes awkwardness of planning journeys around possible toilet stops...and more recently to not being able to eat between meals because if I do and don't follow up with the yellow pills I get soreness and the usual symptoms...I suppose over the years I've adopted a 'head in the sand' attitude to it all - only recently have I started to wonder if my symptoms could be improved by diet. I'm overweight and thought I might try the 5/2 eat/fast regiume recnetly shown on 'Horizon' and then wondered how it might impact on my UC...does anyone have experience of that? I also feel I'd now like to look at 'good foods' and 'bad foods' becuase no doubt i'm probably eating all the wrong things!!!

Anyway, sorry for the long ramble - I'm very glad to have found the forum and hope that I might find some useful tips for making my life with UC less stressful (better late than never I suppose) - after this year's holiday I have told my OH that unless we hire a campervan next time (so that we can carry our toilet with us!) then he may be holidaying alone... time to try and take control of my own body I think!? (If its possible that is...)

Thanks for listening - off to explore the forum now!

 

[Thermo]

I would recommend relaxing and walking around to get things moving. Just to confirm you took it and have maintained drinking large amounts of water and have not passed any liquids or stool yet?

 

[EDZEL]

Hi Thermo
thanks for your response - yes, took the sachet at 4pm and 7 hours later not a dicky bird - am drinking (and now weeing!) but still no stools... I will try a walk around; the relaxing hasn't worked, LOL!

 

[Thermo]

Ok as long as something is happening thats a slight relief lol. Keep up the hydration, it's probably going to be a late night for you. I am the same way with these preps although I'm up all night going to the bathroom every 5 minutes so the alternative is not much better. If nothing happens by the morning I would call the doctor before going down to the test as they won't do anything if you have not been cleaned out.

 

[EDZEL]

Thanks for your support! I seem to remember now that it may have taken a while last time - it was so long ago! I'll let you know how I get on...

 

[David]

Hi there and welcome

I don't have any suggestions regarding the piccolax, but thought I would chime in regarding the folic acid. Sulfasalazine actually interferes with folic acid which is why the two are usually prescribed together. Otherwise you'd likely end up deficient in folic acid. Here's the thing, if you're taking folic acid long term and have IBD, I'd strongly suggest getting your vitamin B12 levels tested as well. Might as well get your vitamin D too since people with IBD are commonly deficient in it.

Again, welcome. I hope your procedure goes smoothly. Please keep us updated

 

[EDZEL]

Thanks David - the folic issue makes sense of the reason our first child had spina bifida : i'd been taking sulphasalazine for 7 years at that point but no one had ever suggested I take folic acid until after I lost the baby! Was the link between the two drugs known in 1991 I wonder?! Certainly the link between folic acid and spina bifida was I think only just starting to be talked about in the press, I remember. I do know that I felt let down by the medical profession at the time...

The thought that I need not have lost my daughter to what we now know is an entirely preventable condition is an emotive one; the only consolation I take from it is that we might not have had our son, who is about to start Uni. Every cloud and all that...

I will definitely get my B12 and D levels checked out, thank you. I have to wonder why my GP has not suggested this!!! When I see the consultant next week following my procedure today I will be sure to mention it.

The mixture finally worked - at 5am!, but not spectacularly. Have a feeling that will change once I've taken the second dose at 8am...!

 

[David]

Hi Edzel,

I've been staring at my computer screen for about five minutes wondering how I should respond. I always want to tell the truth to members but sometimes the truth is... troublesome.

As you can see by the dates on some of these studies, yes, there was knowledge that sulfasalazine interferes with folic acid long before 1991.

I'm sorry.



*hugs*

 

[Thermo]

I took sulfasalazine for a good 8-10 years in the 90s and nobody ever mentioned folic acid to me either. Nobody told me about any vitamins actually so I think it was a problem of the medical field during the 80's-90's and they didn't take it seriously. How did things go today by the way?

 

[EDZEL]

Thanks for the replies - David, I'm glad that you were honest about the folic acid issue - medical advances are not always picked up and made general knowledge when they should be, and that is a sad fact! I think I'm beyond wanting to blame anyone for what happened, to be honest - I mean, why didn't I find out more about my condition and possible issues before starting a family? If I'm going to play the blame game then I feel I am perhaps as much at fault... But whilst I still feel very sad about the daughter I never got to know, I cannot ever regret gaining my son - who by the way got his exam results today and has got into the university he wanted, so much cause for celebration in our house today!!

My procedure today went very well actually - the piccolax did work in the end and whilst I wasn't completely empty of fluid, it wd enough for them to see right to the end of the bowel and take biopsies from all areas. I had the sedation but it was completely unlike the last time; today I was awake and relaxed throughout the procedure, which took about 40 minutes, and even watched the whole thing on the monitor (which I didnt think I would want to!) - it was fascinating and all the staff were very friendly, chatting to me about what was happening throughout. Apparently all but the last (lower) 15 cm of my gut was in very good condition, with even the 15cm being quiesient, so I felt much relieved! It will be 8 weeks before I get the results and having paternal grandfather, great grandfather and great great grandfather who all died of rectal cancer I can't pretend that I'm not a little anxious...but the consultant seemed very pleased with everything she saw so I am quietly hopeful that all will be well.

To sum up, the whole procedure was nothing like as awful as I'd half-remembered and feared, and I feel as if a weight has lifted from my shoulders! Thank you everyone here who has come back with advice; I will be sticking around because I'm sure there is much more to be learned - I've stuck my head in the sand for far too long and now want to find out all I can about my condition and the best way to a better quality of life - and it's just great being able to talk to people who understand! :ysmile:

 

[David]

Edzel, if anyone is going to be blamed, the VERY LAST person on the list should be you. PLEASE do not blame yourself even a tiny bit.

I'm so glad the procedure went well! Best of luck with the results