ulcerative colitis misery

mgn

Hi, I got a flare up for the past month,in the past when i had a flare up doctor but me on prednisolone tablets and predsol enemas for two weeks and usually be fine after a week ,problem now is predsol enemas are discontinued so i have being told in chemist, the last time the gave me predfoam instead but i found it no good
Went back to doctor again and put me on salofalk enemas without tablets three weeks ago and still not cleared up okay for a few days and flare up again dont know what to try next
Anyone else with this problem any advice would be very much appreciated
thanks

mgn

Anyone ?

FTT2004

Hi mgn,

I've had UC since Sept 2008. It took me 9 months to do something about it. The symptoms started in January of '08. I was referred to am exceptional gastroenterologist. Initially I was on asacolon and immuran. The flare ups were sporadic and got worse in 09. After an emergency admission to an ED for what was later primary schlerosing cholangitis ie. my bile ducts collapsed which resulted in a 4/52 stay in hospital. The first 2 I've no recollection of due to the analgesics I was on. I require a stent change every 9/12 but that too seems to be playing ball. In that time I was switched to mezavent from asacolon but when the flare ups were bad and I was maxed out on 1200mg daily I developed a nasty rash on my arms that was itchy as hell so the decision was made to move me to "biologics"as he called them.

I too was on prednisilone in the form of deltacortril. They kept an eye on my liver function but I found the mood swings too much and the excessive weight gain. We moved onto my final treatment regime of Humira (2/52), a tumour necrosis factor alpha modulator, and immuran x3 daily. The Humira is a sub cut injection ie like an insulin or epi pen auto injector. I have had some flare ups this year but nothing like it used to be. I've a whole new lease of life. I changed careers and haven't looked back.

The gastroenterologist I'm seeing is retired from the public hospital sector and I see him privately but I'm sure your GP could recommend someone of his calibre. If you're really stuck I will contact him and ask who he would recommend. He really is an amazing specialist and the kindest you could meet. So too is his PA. I'd be lost without them. I've been extremely fortunate to be sent their way in the first place.

PM if you need any other details else.

FTT

mgn

Hi FTT2004
Thanks for reply.I am seen a gastroenterologist at the moment,he seems okay just trying to get something that works for me.I'm going to get some prednisolone tablets of him because salofalk enemas just not working on there own,I hate the prednisolone but i think it worth putting up with side effect's for a week or 10 days just to get rid of it.I dont know why the dont want to give me prednisolone in the first place,my own doctor has no problem giving it to me

FTT2004

The prednisilone is not a good idea for long term use. Your gastroenterologist recognises this. I am surprised that he hasn't moved up the treatment pyramid as steroids is for acute flareups and if you're using them much then it's far from under control. I was of the same opinion with my docs and I began to tailor my regime as I realised what worked and gave feed back to my gastroenterologist & GP. Its not a typical "im the docor, your the patient" relationship, if i dont agree they know pretty quick and i do my own research. I found the enemas would irritate me and discontinued their use. Excessive stress for me was my trigger. Changing to a more rewarding career helped where I didn't have to deal with a certain type of personality while developing a fcuk em attitude to those who are like that as I found I took things personally too much.

FTT2004

BTW I'd mention to your docs about looking at Humira as an option. They test for latent TB at the start and you need to be careful around people with easily transmissible infections but it's all manageable.

mgn

Just back from doctor gave me prednisolone 5mg tablets,starting with 6 and reducing by 1 every second day (665544332211) so going to try them now and see how i get on,has worked in the past with predsol have to see will the work with salofalk

aidonitron

Prednisolone will do a lot of damage to your bone density. That will cause you a lot of serious problems when you're older. It also causes other problems. Although it is brilliant for flare up treatment.

I've had very aggressive UC since 2008. I was actually scheduled for surgery two years ago and only avoided it because the theatre was needed for emergency on that day.

Last week was the first time I've ever fully calmed a flare up without prednisolone. My doctor said he would no longer prescribe steroids for me as my bone density is already too low so I knew I had to throw everything at it to avoid surgery.

This is what I did to calm flare up

Plenty rest (a week off work)
I didn't eat in until 3pm each day (this gave my bowel a good rest) and then only a bowl of cereal with soya milk until dinner when I would have a light meal.
Absolutely NO high sugar food like chocolate etc
No fatty food
No dairy
No meat except fish
No potatoes
Ease off high fibre 
Eat whole grain rice
Eat steamed carrots
Use soya milk
No fluoride (I drank plenty river rock water)

Glutamine powder every morning and evening (this is an excellent supplement available in any health food shop, great for helping with damaged bowel)

All of the above is non medicine.

The only medicine changes were using salofalk and predfoam alternating them and using them at the maximum dosage allowed for me. And if I needed to clear my bowel I would use them again.

If this benefits you please let me know!

I hope you are well soon. Colitis sucks! I hate it so much!