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Introducing myself & a couple of questions!

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Ulcerative Colitis
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Posted 4/9/2014 1:14 PM (GMT 0)
Hi everyone,
I've been reading many, many posts here in the last couple of months, so thought I should final give in and sign up! turn
I'm quite a novice at having UC but have read up a lot - I've put in my info in my signature (I think!!) :-)
Basically, I've been flaring since December (Christmas day is when it really kicked off - how could I forget that day!!). I ignored it for a while, thinking it would go away - after my first scope, I was told I'd mild colitis, and I didn't really know that it went into flares, so I wasn't sure what was happening, as it's the first time I'm flaring! I was put on a cortisol enema & asacolon suppositories twice a day, but they did nothing & it kept getting worse, and I was losing a serious amount of weight & fluids. Eventually I was put on the prednisolone steroids & they did the trick at getting rid of the flare symptoms - with awful side effects, as I'm sure most of you know! :-)
Anyways, I was put on Imuran, got a rash, so was taken off them two days ago. And have to start 6MP tomorrow, at a lower dose - which I'm a little scared of...
Do people know, are the side effects of 6MP worse than Imuran? In general I mean, I know that with this disease, everyone reacts to everything differently, and has different experiences!
What I'm finding the most difficult are the emotional & psychological effects of this disease... I feel so down all of the time, and like I could cry at any second. I have good days and bad, but these last couple of days have been bad, what with the Imuran not agreeing with me, and having to start again with a new drug, that has new side effects to get used to, etc etc... Does anyone have any tricks for keeping your chin up during the tough times? confused
Anyways, thanks to anyone who read to the end of this! :P I just wanted to introduce myself, and share a small amount of my story,and ask some things! Thanks for anonymous help I received by reading your posts before, hopefully I'll be a more active member, now that I've signed up! turn
Posted 4/9/2014 1:31 PM (GMT 0)
What country are you in? Treatment options can be different from country to country.
Posted 4/9/2014 1:36 PM (GMT 0)
I'm in Ireland! I'll include that in my signature too. :)
Posted 4/9/2014 1:38 PM (GMT 0)
Have you just come off the steroids? This might account for some of your emotional sensitivity at the moment.

I also switched from Imuran / azathioprine (after a few weeks) to a low dose of 6-MP - just 25mg a day. This was changed from 50mg 6-MP on alternate days because I was getting some nausea. The nausea subsided, and the only possible side effect I have at the moment is extreme tiredness. I think this is a known side effect in the first few months of treatment and I'm going to ask my GI about it next time I see them.

My blood test results seem to be fine. I wasn't OK on 50mg Imuran (azathioprine) - liver results were off.

Emotionally I think the key is to accept that you have a chronic health problem, but you are newly diagnosed and acceptance may take some time. Allow yourself to feel whatever you feel. I think there is an element of grieving for the life you had, when you get a new chronic illness.
Posted 4/9/2014 2:48 PM (GMT 0)
Yes I just came off the steroids last Friday. I felt very bad on them for the first few weeks, which then got a bit better, and then got bad again towards the end, possibly due to coinciding the start of the Imuran?

I was feeling slightly nauseous at times on the Imuran, but extreme tiredness is a big thing for me at the moment too. I assume it'll be the same with the 6MP? And probably in general, as I'm still trying to heal!
I haven't had bloods done yet, I was due to get them next week, but as I'm off the Imuran, my IBD nurse said to wait until I'm on the 6MP for a couple of weeks, and get them then - though I might get them a little bit sooner than 2 weeks, just to be sure!

It is difficult to try accept it - I've read in a few places that people have said it's an isolating disease, which is true! So many people don't understand, as much as they may try to. And working is difficult, when you're feeling so bad, but you don't look sick (mostly!) so it's hard for colleagues & friends to understand also. Which then makes me frustrated, in my emotionally unstable state! You have put it very well though, there is an element of grieving - I'll try say that to people when I get upset / angry! tongue
Posted 4/9/2014 3:01 PM (GMT 0)
I'd definitely blame mood swings largely on the steroids if you've only been off them a few days!

You said you haven't had blood tests yet. I hope you mean since you switched to 6-MP and not since you started Azathioprine / Imuran. You should have had weekly blood tests done when you started the Imuran. After the first weeks they become less frequent but you still need regular blood tests.

The blood test schedule for azathioprine and 6MP is something like this:
1st month - every week
2nd month - every two weeks
3rd month onwards - every three months
As well as a blood test 2 weeks after a dose change

A switch from aza to 6MP wouldn't require a return to the start of the schedule because they're so similar.

You'll learn to grit your teeth and smile when people say dumb things. You've already had "you don't look ill". People will also envy you for being so slim, even if you tell them how you came to be so thin, and the most annoying is "I know someone who has irritable bowel syndrome". I know IBS is unpleasant and I'm sympathetic towards sufferers, but it is not the same as UC or Crohn's, although some people have both. Most annoying was when a nurse said it to me. Did she really think I was in hospital on immunosuppressants for irritable bowels?!!
Posted 4/9/2014 3:04 PM (GMT 0)
PS just read your signature. If you were only on Imuran for 11 days before being switched to 6MP I'd say you should still have weekly blood tests. That's what my GI and IBD nurses would do. I have a lovely Irish IBD nurse......in London!
Posted 4/9/2014 3:10 PM (GMT 0)
I have been there as far as Imuran and pred are concerned. i did not have the side effect to imuran but then it did not work for me anyway so 6mp was not an option for me.

The reason why I am posting is from memory with 6mp and imuran it takes at least a couple of months to kick in to maintain the symptoms but does not necessarily improve your flair symptoms as such. So normally in your situation it would be advisable to go back on pred on a staged dose for a couple of months so if you dont have any major adverse effect to 6mp it gives it a chance to work.

If you are wandering what happened to me in the end well i did the out of the box. I was sick of the cycle of pred and imuran etc and i just could not get off pred. So i decided to look up the best tcm practitioner for colitis in the UK i could find (chinese herbal meds). This was definitely out of my comfort zone to go down this route because I always listen to my gp, consultant etc but all they could offer me was surgery or worse drugs that I could not stay on long term.

I am now 3 months on the treatment and over 2 months since i last had any pred and I am symptom free. In fact I am better then i was in my last remission. I go 1 or 2 x a day but even when i go twice there is no urgency. I can even wait till I get home from work to go the 2nd time. I am not boasting or promoting anything but if you are really stuck I just want people to know there is another way which may help you.
Posted 4/9/2014 3:32 PM (GMT 0)
My GI said for blood every two weeks when starting / building up the dosage... I mentioned getting bloods to my IBD nurse when she told me to come off Imuran and she said just to wait until I was on the 6MP to get it done. I assume this is because I was told not to take either for a few days for the rash to settle, and therefore the Imuran would be out of my system before starting the 6MP... I'm not on anything at the moment (besides asacolon), my last Imuran was Monday evening. I have an appointment already for bloods Tuesday week, so maybe I'll leave the 6MP until the weekend to start, so I get the bloods closer to a week after it's started...

Wow, can't believe a nurse would say that to you!!
My worst is a girl I work with recently got an intolerance test and some foods came up on it, and I have gone through avoiding different foods known to irritate the gut (and am still avoiding some) but she thinks she has the same as me, and complains constantly - so hard to bite your tongue sometimes!!

Imran123 - I mentioned those concerns to my GI about my flare worsening in that period between steroids ending and before starting imuran, and he said that at the first sign of it coming back, he'd put me back on a low dose of them. I did respond very well to them, even when I was on a low dose it kept my flare in check, and this is my 5th day off them and things are relatively ok, but I'm keeping a watch for it coming back!
I'm really glad you found a method that works for you - I know everyone responds differently to everything! I think it's worth keeping all options in mind, and know that there are always other ways, as you said!
Posted 4/9/2014 4:08 PM (GMT 0)
Welcome to the forum, I'm also in the Irish system having moved back from Europe where I was diagnosed initially. Also had a horrendous first Christmas Day !! Apparently there is a great UC support group in Dublin, have you found them yet?
Posted 4/9/2014 4:08 PM (GMT 0)
Welcome to the forum, I'm also in the Irish system having moved back from Europe where I was diagnosed initially. Also had a horrendous first Christmas Day !! Apparently there is a great UC support group in Dublin, have you found them yet?
Posted 4/9/2014 4:09 PM (GMT 0)
Sorry to hear your having such a difficult time....I happen to believe that sadness/depression is another symptom of the disease for some of us.

My UC is mild in comparison to others, and yet only a month ago I felt wretched, crying for no reason, thinking dark thoughts. I knew this was not normal, not me, I understood the shock, and denial, that many people feel when first being diagnosed, but I also know myself, and knew this was something entirely different...something was very wrong.

So I started taking St Johns Wort, a very effective herb for mild to moderate depression, 2 x 500ml tablets a day, and within a week I started feeling better, within 3 weeks I found myself giggling over daft stuff, I actually stopped in my tracks and realized I was laughing!!!... Also I think when you are taking a lot of meds it is far better to try something more natural.

I don't think people try this, because I don't think they really believe it works, but it worked for me, and from what I have read, many other people too!
Posted 4/9/2014 4:48 PM (GMT 0)
Caycro - no I haven't actually found a support group in Dublin! Do you know what they're called? I joined the Irish Society for Crohns & Colitis, but all I've got from them is a "No Waiting" card for using toilets (which is a great thing to have!)

Poppie - Thanks for your reply - I know exactly what you're describing! Can it be taken along with the prescribed medicine too? I can ask my GI or nurse anyways. Might be something to try if I don't settle on the drugs after a while.
Posted 4/9/2014 5:08 PM (GMT 0)
Hi, I did some research online before taking St Johns Wort, because of course I wanted to make sure there would be no interactions between the prescribed meds I am taking, and it turned out fine. But I think you should mention that your interested in St Johns Wort to your GI, and do some research yourself online, its easy enough to dig around and find out the info. :-)
Posted 4/9/2014 7:58 PM (GMT 0)
Thanks a mill for the info, much appreciated, I'll look into it. :-)
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