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?

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UC since 2001, diagnosed May 2005
Salofalk tablets (Asacol) 4 x 2 tablets daily for maintenance, Salofalk enemas for flares
Oat bran 60grams daily, Metamuscil and multivitamins

Hi...What other symptoms are you having?

The added oat bran and Metamucil will bulk up your stool could be part of the reason you're having more bms.

Is your UC throughout your colon or limited?

The longest I was on the enemas nightly was 4 months. Try not to give it too much of a limitation just yet.

Personally, I would avoid the immunosuppressants and the Pred forever if you can. Not everyone on imuran is symptom free and they do have flares. If you are eventually needing to use it, then do so a while after the triathalon...which will also put your body in a more extreme state which could cause some flare symptoms.

You've already answered your question in stating the 5ASA meds are working for you. The added stress of your expectations can put you in a state that'll cause more disappointment.

My take on it.

Regarding the cancer, etc....5ASA meds are still superior. I just went for my results of the 30 biopsies that my doc took and I'm totally clear except for very slight redness 5cm in the rectum. Could have been from the prep...but my point is that my doctor praised the dedication and faithfullness of sticking with the oral/rectal meds. He also said I'm one of the few who would. So, no dysplasia.
Don't forget I was diagnosed almost 19 years ago and had active UC for 3 years prior. I also have PSC that increases my cancer risk.
My next c-scope is in 3 years.

I'm elated.

I say, if it works.....make it work the best possible way for you. Don't make your goal to have NO symptoms...make your goal to use the meds in a way to keep you symptom free.
If you're already having vast improvement from the flare, then that's good.
You could consider to start tapering the foam and see if you'll improve. Some 5ASA meds if just a bit too much can cause symptoms. It's a fine juggling act that you'll have to figure out.

My very biased take on it...but it's only through experience that I state my suggestions.

quincy

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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.

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UC since 2001, diagnosed May 2005
Salofalk tablets (Asacol) 4 x 2 tablets daily for maintenance, Salofalk enemas for flares
Oat bran 60grams daily, Metamuscil and multivitamins

sorry, I'm not clear on if you've tried the colocort enemas yet? I would NOT go on Imuran without at least giving those a shot-- it's pred, but it's about equivalent to 2 or 4mgs taken orally, and so a lot less intense on your overall system versus imuran. The Rowasa's have never been able to stop a flare for me, but the colocorts definitely have.

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Dx:

Left-sided UC, Jun 2005. Flex-sig only... clear for first 20cms, then inflamed through next 30cms.

Therapies:

Pharmaceutical: Pentasa 3G/day, hydrocort 1x every 7 days
Probiotics: Acidophilus Pearls, Primadophilus Bifidus
Naturals: Caprylic Acid, Methylated B-12, Vit ACDE, Zinc (w/copper), Selenium, Turmeric, Bromelain, Luteolin
Killer Foods: Soda, Fried Food (especially french fries!), Beer, Red Wine, Pepperoncinis

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!

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Oh and yes, I definately agree with AKB about the steroid enemas. These are the only things that really help me out of a bad flare too.

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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).

Hi Sherry, AKB and KTM

No, I haven't tried the steroid enemas yet - that's a fantastic idea. I'll call my Dr's office today and get some. I've also heard that they give you some of the crazy energy of pred so that will be helpful for my triathlon training! Hehehehe. That was the one great thing about pred - I could just go and go. Except for those times where it made me all emotional and I'd start sobbing at my desk at work or at the shops! I don't miss those pred days at all. Bad times.

Increasing oral 5ASA is also a good idea. I'm on 4 grams and the max is 4.8 grams I think so I can add another tablet. I still have a feeling that I am going to end up on Imuran though. At least now I feel more or less at peace with that idea. I've been fighting going onto it for about 2 years now.

I really appreciate all your suggestions and advice.

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UC since 2001, diagnosed May 2005
Salofalk tablets (Asacol) 4 x 2 tablets daily for maintenance, Salofalk enemas for flares
Oat bran 60grams daily, Metamuscil and multivitamins

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)

Hi All

Just wanted to write a quick note of thanks for all your help with my recent issues. I called my Dr and he and his nurse said that I could try the steroid foam. While I was waiting for the chemist to get some in, I tapered the morning 5ASA foam (thanks Quincy), upped my 4gms of oral 5ASA to 4.5gms (thanks Sherry) and those two things alone reduced my BMs down to just two in the morning.

I've now done two days of the steroid foam and am already just down to one very good BM daily. Wide diameter, formed and even had to push a little (it is so nice that I can share these details with you all without grossing you out!). Great stuff. The Dr said apply it at night but I didn't sleep very well last night so perhaps the steroid was responsible for that? I might move it to the morning. Thanks to Sherry, Old Hat, AKB and KTM for that suggestion! I'm definitely going to keep that steroid foam (Colifoam in Australia) in my arsenal of UC weapons.

Dr says do the Colifoam for 14 days and then hopefully we can stop. Does that sound about right?

After telling me last year that I should think about Imuran, the Dr and his nurse are now saying that I am nowhere near needing Imuran and that if I am willing to keep up the effort with rectal meds then they will give me the freedom to do a lot of experimenting to see what works. They'll only suggest Imuran if I get sick and am struggling long term.

Anyway, thanks again people. This website is amazing - the quality of the advice and assistance is here fantastic!

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UC since 2001, diagnosed May 2005
Salofalk tablets (Asacol) 4 x 2 tablets daily for maintenance, Salofalk enemas for flares
Oat bran 60grams daily, Metamuscil and multivitamins

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!

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UC for the last ten years
Current Meds: 6MP
Past Meds: You name it; I've tried it.

K_Cat..what rectal med regimen are you on....just the steroid foam? or the Salofalk at night, the steroid foam in the morning (plus the asacol 12 daily)?

It's good you're doing better. I'd still taper them regardless...and you have lots of room to experiment...LOTS!

Keep us posted.

quincy

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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!!

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UC since 2001, diagnosed May 2005
Salofalk tablets (Asacol) 4 x 2 tablets daily for maintenance, Salofalk enemas for flares
Oat bran 60grams daily, Metamuscil and multivitamins

I agree that you should definately taper off the foam because when I was on the steroid enemas my GI always had me taper off them. It's never wise to stop any sort of steroid suddenly because it can mess with your adrenal gland which is why a taper should be done. about the trouble sleeping - I have to say YES it definately can be from the foam. I hard a hard time sleeping too when I was on the steroid enemas. Even though only a small amount of mg's actually enter your bloodstream, it can still cause mild side effects such as insomnia, mood swings and munchies :)

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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.

Great news, Knitty_Cat! The Cortifoam/Colifoam IS helping. I thought it would. 14 days of single application sounds right; what does your package insert say re tapering? I think it's not crucial 'til after 21 days of continuous steroid enema use-- because the foam is not as high in steroid content as the liquid retention enemas. I never had any problem falling asleep after using it. I tend to have more sleep problems from extensive 5-ASA use, though; it seems to get my kidneys working overmuch. / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 Colazal daily; seem to be back in remission)

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

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Hi All

I've just sent an email to my Dr (actually his nurse, who is the person we contact him through) to ask about tapering. The package insert just says use it for 14 days straight and then stop and that was also my Dr's initial advice on how to take it. I think I'll have to stick using it at night for a few more nights as I have to get to work early for a course I'm on, so finding time to have a lay down for 1/2 hr after the morning BM will be a bit difficult until that's over! As far as side effects go, I get to sleep ok but wake up 3 hours later and then am only able to doze here and there until morning.

Colon is still great. Just the one perfect BM after breakfast so I'm happy with the result. Just got to watch the munchies that I feel coming on from the steroid foam!

Thanks again everyone for all your help.

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UC since 2001, diagnosed May 2005
Salofalk tablets (Asacol) 2 tablets 4 times daily (4gm total) for maintenance, Salofalk enemas and/or Colifoam for flares
Oat bran 60grams daily, Metamuscil and multivitamins

Currently using Colifoam (steroid foam) nightly to clear up a stubborn flare.

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.])

Hi All

Me again! I had asked the Dr for a blood test to check my inflammation at the same time I asked for the steroid foam. I did the blood test just before starting the steroid foam. The Dr has just emailed me to say my inflammation markers were totally normal! Now I'm really puzzled. Blood inflammation markers have always been extremely reliable for checking my inflammation in the past. Do you think perhaps I was overdoing the 5ASA enemas and there was so much liquid in my colon that it had to go 3 times daily like I was? I was just thinking this morning that it was nice to have a break from liquid enemas (I'm still doing foam at night so haven't added 5ASA enemas back in to my schedule yet). Maybe going 3 times a day was my new normal and I over reacted? Maybe I'm developing Munchausen syndrome! Hehehehe.

Dr says to taper the steroid foam but the temp nurse filling in for the regular nurse didn't explain it very well so I'll have to double check. She said "do 14 days straight then cut down slowly, so do maybe 6 the next week, etc." They haven't given me enough foam to do it that slowly and there are no repeats on the script so not sure what she means. If she means do one less a week then that seems like a really slow taper. How do you guys taper the steroid foam?

So it seems I panicked for nothing! Heh. Oh well, it still worked out ok as I learnt all about steroid foam from you guys (thanks again for all your help) and the blood test also showed that my ferritin levels (iron stores) were low - 13 when the range should be 15-200 so I have to take iron tabs for 3 months. Great to catch and treat the iron issue nice and early (I'm always lowish, even in pre-UC days).

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UC since 2001, diagnosed May 2005
Salofalk tablets (Asacol) 2 tablets 4 times daily (4gm total) for maintenance, Salofalk enemas and/or Colifoam for flares
Oat bran 60grams daily, Metamuscil and multivitamins

Currently using Colifoam (steroid foam) nightly to clear up a stubborn flare.

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.

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Tapering off the steroid foam should not be a big deal because you were pretty much on the road to remission when you started using it, & you've not been on it for that long. I'd say to estimate how many doses you have left  & start out tapering every other night. You should need only about a week of tapering if you've been on the stuff for a month or less. Good luck & keep us posted. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])