Advice on sticking with enemas versus trying Imuran

Hi all

I'm feeling like I'm at a crossroads with my UC and would appreciate your opinions and advice.

For the last 18 months, I've been able to keep my UC in check with oral Salofalk (Asacol) and Salofalk enemas (same as Rowasa) for flares. However, this latest flare is not responding so well to the enemas. I've been doing liquid enemas nightly for over 3 weeks now (along with a foam 5ASA enema most mornings - equivalent to a rowasa enema). So two enemas a day (total 4 grams 5ASA) plus 4 grams of oral 5ASA a day. I'm feeling well enough and full of energy but still going about 3 times a day. No blood, no urgency or D but remission for me is once a day after breakfast. Three times a day isn't right (for me) and, while it isn't D, it isn't as formed as it is in remission.

I'm going to ask my Dr for a blood test to check for inflammation as I'm sure I must still have some. Normally I'm perfect after 2 weeks of nightly enemas and can then taper. One stubborn flare wouldn't normally freak me out but I was still on a 4th nightly taper from a flare in June/July, in which I was still on a taper from the flare in March. So I've either been having the same flare since March or I'm having flares every couple of months. I haven't been able to go longer than every 4th night for an enema since March.

My Dr said I could try Imuran so that I could "get on with my life". He's a really cool Dr so he has been supportive of me using the enemas but is also happy for me to go onto Imuran.

I guess I'm looking for advice and opinions as to whether I should go onto Imuran. I was really scared of it, but recent posts here have made me feel a lot better about it and My Dr said it sounds scarier on paper than I'll actually find it in practice. We have agreed that I would certainly go onto it if I need pred again. He is also warning me that having inflammation will increase my chance of colon cancer later so getting the inflammation down (not just dealing with the symptons) is what we need to do.

Do I sound like I need to go onto Imuran? The thought of it making me totally normal like it does for some people is really tempting, but another part of me says that 5ASA in tablet and enema do mostly work for me - stick with what works (assuming I can get my inflammation levels down on it).

One other question. I am doing a triathlon training program for a triathlon at the end of November. I've been training really hard and really want to do well at it. Will the Imuran make me tired and not able to train at first? If I start taking it, should I wait until after the triathlon?

Hi Quincy.

The oat bran and metamucil most likely aren't causing the extra bms as I've been doing those for years and have have heaps of time in genuine remission when I only go once a day after breakfast. I had 10 months of remission up to March this year and just had one bm after breakfast - even if I do more fibre then it still remains like that. It's only when I really overeat (like Christmas day!) that I ever have a second BM during the day. I also used to get a year or two between flares and this was also the case.

I have left sided UC. Only real symptoms now are increased BMs that aren't formed enough. However, if I stop the morning foam or even try to replace the nightly liquid enema with foam (foam is easier to use but perhaps doesn't get as far) then I get D and pain.

I'm a big fan of the 5ASAs, that's for sure. I'm happy enough that they work controlling my symptoms, just worried that they aren't keeping the inflammation down to nothing. My last blood test still showed slight inflammation even though I was happy enough symptom wise. If I've got this continual inflammation then I'm increasing my chances of colon cancer. Plus I feel that I'm only ever a few days away from getting a bad UC flare and the 5ASAs are just masking it. I'm doing 8 grams of 5ASA a day and it helps, but it isn't doing all it should at the moment. Plus part of me wonders how I'm going to be able to do things like travel overseas when I have to bring 2 enemas a day to potentially keep things under control.

Thanks for your advice Quincy. I think I'll keep going on the 5ASAs for a bit and see how I go. Although I'll also get a blood test and see just how bad my inflammation is at the moment.

Has anyone gone onto to Imuran for reasons other than being steroid dependent? If I do have to go on Imuran then I'll still be taking my oral 5ASA to protect against colon cancer.

My personal opinion is that the longer you have this disease, especially if it's usually active, the likelihood your colon is going to be more dysfunctional. Over the years I would always have to adjust to my new "normal" which can vary in wide degrees. You definately are not in remission, you may be close though. Can you increase your oral Salofalk to see if that makes a difference? I have left sided too and my GI said that this is one of the most stubborn forms to have for some reason. No, you don't have to be steroid dependent to start on an immune suppressor. If 5-ASA's are failing you or you're not achieving the desired result then I think that it can be considered. Especially since steroids are such a devil drug!

I was going to suggest the colocorts like AKB did.  I used to do colocorts in the morning (or cortifoam) and then Rowasa (solafolk) at night.  Definitely helped.  Until it didn't.  I was not steroid dependent when I started on Imuran - I think I was "steroid immune!"   The pred never did anything for me except give me side effects.  And after about 4 months of continuous flaring with no improvement - even with pred and increased 5ASA and doubled & tripled up enemas - we went for Remicade and then Imuran.  Now I do both - with 5asa - and have been remission ever since (knock wood).

I'd say it's too soon to start on Imuran. Your increased bms could be the result of continuous physical exertion: do you get enough rest? It is also possible that other oral 5-ASAs would work better for you than Asacol. I recall that you wrote about Lialda being not yet available in Australia. What about Colazal (balsalazide disodium)? In my experience it's great for reducing no. & liquidity of bms, especially in comparison to mesalamine enemas. For left-sided inflammation the steroid enemas can indeed work speedy wonders. You would likely have a choice btw budesonide & hydrocortisone; the former is supposed to have fewer steroid side effects. In the U.S. there is also the option of Cortifoam (10% steroid rectal foam-- very convenient for travel use). Please keep us posted on your situation. / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 Colazal daily; seem to be back in remission)

Knitty Cat,
This is really good news. I'm so happy to hear it! (Also happy to hear that you can get Colifoam/Cortifoam in Australia. I still need to take up my asacol foam cause with the UC organizations here!)

14 days sounds right to me. That's about what I do to get things under control. I give or take a few days depending on how I'm feeling. I've even used it twice a day when I'm in really bad shape.

Just FYI, my doctor usually tells me to taper the steroid foam and I do. Sometimes if I use it only for a week, then I don't but if I were using it for 2 weeks, I might just go to every 2nd night for another week to be on the safe side. But you can ask your Dr about that, I guess.

Also, like you I can't always use it at night. I know it's better if you use it at night (and lie on your left side to sleep too!) but I figure if I can just use it any time during the day it's better than not at all.

Here's my latest theory -- doctors might recommend Imuran, Remicade, and Prednisone to patients who are flaring RATHER than rectal meds because they don't believe we'll use them.
It's not a bad assumption on their part but some of us actually do use the rectal meds and find they help a lot!

Congrats on the good news!

Hi Quincy, since the Dr said to use the steroid foam at night, I've used that for the last two nights with no 5ASA enema. If the sleeping doesn't improve then I'll move the steroid foam to the morning and would then be able to do 5ASA enemas or foam at night. I'm keen to try at least a few more nights of steroid foam as it will spread further up my colon if I can stay laying on my left side after application. I know this from my 5ASA foam - it really does get further up my colon if I use it at night. Do you recommend keeping some 5ASA rectal meds in the mix?

I'm on 4.5gm oral 5ASA but I NEVER go lower than 4gms a day, even when I'm in a fairly lengthy remission. For some reason, my body likes 4gms daily and my Dr and I have never been successful in getting it down, no matter how slowly we take it. We don't even think about getting that down anymore. It works and is side-effect free for me so we are just going to leave it.

Julee, thanks for the info on the steroid foam. I'm going to let my Dr know how I'm going tomorrow and see if he wants me to taper and how he wants me to use or combine the 5ASA enemas and foam. I know what you mean about Drs suggesting tablet things first. From what my Dr says, I think he gets a lot of people not willing to try rectal meds and then has enough problems with patients not taking their drugs anyway, so he figures these types aren't going to follow a complicated dosing schedule with the rectals. He was very tentative about suggesting rectal meds for me a first but has been really happy with my attitude towards them since. His nurse also once gave me some left over enemas from a patient who didn't like them and there were only 2 missing from the boxes so the person can't have given then a decent try.

Also, I read your other post about feeling well - woohoo! That's great to hear. Now you'll have the energy to start your nation-wide campaign to get Asacol foam in the US!!

Great that you're feeling better.  If it were me I would probably keep the 5asa rectals in the mix.  I would do the 5asa at night and the steroid in the morning.  As long as you lay down for about 1/2 hour you use it - it will spread just as far in your colon as at night.  The only difference is if you end up having to go during the day - then it is not remaining in your colon as long.  Why not try it both ways and see which way you feel better.

Keep it up and don't get frustrated if you have a bad day!  And yes - definitely taper BOTH - the 5asa and the steroid foams or you will have a relapse.

It's trial and error...if symptoms start soon after ceasing the enemas (if not tapering)...you'll know soon enough to taper them.

The point to taper is to find a possible maintenance dosage if necessary.

Not unheard of and is an option. Again..trial and error. Remember, most doctors say to just stop 5ASA enemas as well...to the detriment of the patient..most of them.

quincy

You will not likely have any side effects (such as increased appetite) from the steroid foam. That's the great thing about it-- besides ease of application & relief of low end symptoms.  Steroid side effects kick in within a few weeks on Prednisone, but take longer to show up if one uses the hydrocortisone enemas-- because less steroid is absorbed systemically. I cannot comment on budesonide enemas, having never used them, but they are supposed to be less problematic than hydrocortisone from the standpoint of systemic side effects. Hopefully, you'll continue doing well on the present regimen & not have to move up to the liquid retention enemas so this info will be just a store-away. Keep us posted on your situation, eh? /Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

Usually when I taper any rectal meds, I start by using them every other day for about a week or so - In the meantime, I always to be sure there is not an increase of symptoms though with steroid anything you might have a slight increase of symptoms until your body accustoms itself. If things are going good then I go to every 2 nights for a week or two, same thing, check for symptoms, then every 3 nights and so on. The last time I was on steroid enemas I had to taper super slow because at the time I was on them for nearly 6 months so my body became dependant on them, but I'm glad I was finally able to get off them.